Dry Eye Awareness Month 2026 Survey Results

How has dry eye impacted your quality of life?  

I use a CPAP machine at night and find it blows up into my eyes through my tear ducts. I have to use gel drops or ointment at night to counter act that, which helps. But now that I'm retired and no longer sit in front of a computer all day, my dry eyes have gotten better and I've found PF Systane eye drops that help with tear evaporation have really made an improvement in my quality of life and pain from dry eyes. I recently had cateract surgery and found I needed to use more PF drops to help with dryness, but that has gotten better as well.

It's hard to wear my gas permeable contacts especially in the winter. The rest of the year I constantly carry dry eye solution with me.

My primary work as a musician and as a plein air artist was severely impacted as was my primary recreation activity of walking and hiking. My first troubles with dry eyes happened on a camp trip and backcountry hike with high/low temperature extremes and low humidity, a plein air artists event and a solo outdoor music performance on a windy afternoon, all in 2007 and involved a torn cornea. I no longer can do any of these activities without difficulty if at all due to eye pain and excessive tearing. Even indoors, out of wind, my eyes are too teary to see well (we have humidifiers, but...).

cequa has made it managable. previous to cequa life was miserable. pain, light sensitivity, red inflamed skin around eyes, eyes watering a lot - like looking through water- difficult to walk down steps

Constant blurry vision. Time and money consuming daily treatment regimen.

My Dry Eye Disease has an extreme impact on my life socially, financially, emotionally, and physically. I must use prescription and OTC eye drops every 2 and 3 hours. Serum eye drops cost me $200.00 every 45 days. Meibo is $49.00 monthly. The financial burden for OTC IVIZIA, Hylo Optase night ointment is $15.00-$17.00 each monthly. More financial costs include OcuSoft Eye lid scrubs, and airline/hotel expenses for evaluations from experts, and eye masks. Socially, I am required to interrupt and stop what I'm doing to use my eye drops, otherwise I experience eye pain, redness, decreased vision, and cornea abrasions. Always living on the clock to ensure I take my eye medications as prescribed to prevent eye complications is emotionally draining, and socially awkward. Traveling, I must bring ampule supplies, ensure prescription eye drops are stored on ice or refrigerated as required to ensure medication stability. I must coordinate time for heated eye mask treatments which proves very difficult when traveling or even running errands in town.

I have 3 different medicines I am to take. Which relates to using some form of drops 8 times a day. So how am I to get anything else done as I feel I am always going in to use some sort of eye drops. If I don't they are very tired, sore, scratchy and start having some vision problems of blurriness. Therefore, I don't drive as it may not be safe until my eyes get better by using my drops. So when I have to go any where, I have one bag with all of these eye drops vials so I can be sure to use them. I have just had hip replacement surgery and been having trouble keep up with them. It's like that's all I have to think about. Yeah, right. There has to be a better way.

It affects my driving. My eyes always feel inflamed. Filmy floaters. Sometimes they just hurt.

I am having difficulty reading which I love to do. My eyes feel uncomfortable most of the time. I have to do so many extra steps each day to take care of my eyes - drops, ointments, lids scrubs, compresses, night goggles.

I have to sleep with taped eyelids. I avoid locations that are overly windy. I don't tolerate air conditioning or ceiling fans. I have continuous edema that doe snot abate.

Dry eye has immensely impacted my quality of life. I have discomfort and/or pain most of the time. Part of the discomfort stems from blurry vision due to dry eyes. It has also forced me to adjust activities — I can’t read for more than a few minutes at a time; have to be aware of, and try to avoid environmental factors that affect my eyes (wind, fans, dry conditions). The blurry vision also makes driving stressful.

It is just something I'm constantly aware of. After years of treatment and significant out of pocket expenses, my dry eye disease is maintained at a decent level, but the constant fighting with insurance companies and their complete ignorance and denial of the severity of dry eye is frustrating at best.

Unable to read watch tv

A lot! Took almost 2 years to find a treatment to restore my corneas (autologous serum drops) plus special sclelral contacts. During that time I couldn't read more than a few minutes at the time. Meant I had to go on medical leave for extended periods of time. And had to avoid bright sunlight, drivint at night, etc.

Reading

I have many eye related comorbidities, so I am not sure which condition is impacting the quality of my life the most.

My eyes are much better now. I am wearing contacts for sports and a few other occasions. previously my eyes were blood shot and sore from the dryness

my quality of life is very poor. I can no longer live a normal life.

need to clean, rehydrate scleral lens multiple times during day

I have scar tissue on my corneas from corneal ulcers that were exacerbated by crystals in my tear film, built up from using ibuprofen as recommended by the many doctors I saw for the corneal pain. It affects everything. Scleral lenses are uncomfortable due to my allergies causing a lot of eye mucus. So I see everything through these scars, it's blurry and fragmented.

1. Contributed to stopping my career progression. 2. Severely limits how long I am able to drive. 3. Prevents me from watching fireworks or movies in a theatre. 4. I need to shine a light on reading material.

Very dry in AM

My vision is less clear.

In Sept. 1990 I had my lower tear ducts cauterized because of my very dry eyes. It did not help that much and I have had continued issues ever since. I have had rheumatoid arthritis since 1978 and that more than likely caused some of my dryness. I wore contact lenses of various sorts until 2008 when the dryness made them too hard to wear. Over the counter tear drops were used constantly. I started Restasis in 2003 when they were available and have used them religiously until changing to Cequa in 2023. I tried autologous serum drops three times (in 2018 and 2021) and could not tolerate them but kept trying because my doctor wanted me to. I avoided fans, air conditioning pointed at me in the car, etc. I stared seeing a Dry Eye Clinic doctor at UT Southwestern Medical Center. I tried Ziena moisture chamber glasses. I got scleral lenses in 2023 and am on my second pair and they are wonderful but are a lot of trouble. Trying to decide when to exercise and when to shower is a daily scheduling issue with the sclerals. The daily 30 minutes with the electric mask is another time waster. I have used an eye ointment nightly for over 20 years. I don't think my vision is that good and I often have vision issues due to the lenses not being totally clear.

The wind and sun really bother me. I can not be outside when it is windy. Makes it hard to be with family for outdoor activities.

I need to work on a PC for my accounting work and seminars. So a strong problem.

I live with this disease day after day. It's gotten to the point that depression sets in; some days worse than others. The people around me have no idea what a debilitating disease this is. I've tried to explain, but I just get a stare/look.

It affects me daily with pain or discomfort and the anxiety. Limits outdoor and indoor activities, driving and the expense of supplies and procedures

It has impacted my whole life and I am just now realizing it as it progresses. I have just received my first Sceral Lenses. I am determined to get my life back.

So much pain before my scleral lenses, and reduced vision that kept me from driving.

My dry eye was severe until I went through the gamut of treatment options and found something that works.

I wake several times a night (at least) needing eye drops. Also vision is blurry most of the time so I cannot see as well. Most documents harder to read.

Eye maintenance requires quite a bit of daily effort. My case is not as bad as others. But it still is very uncomfortable when my eyes dry out the closer to bedtime it gets

It is pretty well controlled now scleral lenses, however, they are expensive and Medicare does not cover. They can be a hassle to get in and out, even after several years of wearing. I live in an area without a scleral lens provider so have to drive 3.5 hrs for care.

I cannot stay on a computer for very long . Shadow vision .

I am a high myopic and NEED to wear contacts for sports and would prefer to wear them in public but my dry eye has made it hard and I wear my lenses sparingly. Sclerals did not help

My eyes always hurt in the morning. I don’t wear eye make up anymore, so I feel ugly.

It has severely impacted my abilities to perform sport and daily activities, i.e. driving, walking, particularly outdoors, that I happily participated in prior to my diagnosis.

I am less social , stopped playing canasta, having lunch with friends . Going to movies . More isolating, more depressed

I can't work a full time job because of the pain. I need to make sure I get at least 10 hours of sleep to make sure my eyes are rested and have to do my treatments throughout the day. I also cannot drive more than an hour at a time. I have been suffering with this condition for about 6 years and it is getting better a little due to time and all the treatments we have access too now.

spend less time doing things I love, tend to ask others to drive, want to rest more, depression. 2nd guess all I might do and decide based on how my eyes might feel. Stopped going to late night things.

Distracts me from fully concentrating on my work, especially during flare ups, causes worry when I travel because I know traveling usually causes eye irritation and dry eye flare, I always have to have eye drops in my "go bag".

I carry eyedrop vials everywhere I go and am in constant fear of getting anything in my eye as I don’t have the fluid to work it out.

difficulty driving at times and reading.

As someone who suffer from Sjogren's Disease, this autoimmune disease creates massive inflammation throughout my body, wreaking havoc on all my moisture producing organs. Every surface I used to take for granted as working normally: my eyes, my mouth, my throat, my gastrointestinal tract, my urogenital system is starved for moisture. I can no longer smell, I have no sense of taste, and my eyes have all but stopped producing any tears as my tear glands have been irreversibly destroyed by my own immune system. The pain caused by eye surface dryness is constant and no amount of drops or medications can fix that. The only thing that has helped are my scleral lenses.

Constantly bothered by how uncomfortable my eyes are - dealing with painful dry eyes has caused eye muscle fatigue, difficulty lifting eyes - hard to just get out

I was only able to wear lenses for short amount of time each day, therefore I had to plan my life in 4 hour intervals. Driving became a major problem during the day & was unable to drive at night. Difficult to make social plans because I was never comfortable wearing lenses for long periods of time

I have very little natural tears. I use eye drops every few hours all day long and overnight. I usually wake up with pain in my eyes since the gel has dried up in my eyes. I don't like the ointments because they are difficult to impossible to remove and seem to always be recalled or on backorder.

On every level, both socially, professionally, romantically, etc.

I feel frequent discomfort and have tried many remedies, over the counter and prescription, but none seems to help. The burning feels like soap/shampoo in my eyes and makes it hard to concentrate.

Eye pain can be physically and mentally exhausting - my eye pain from dry eye occurs at night so it's difficult to sleep. During the day, I wear PROSE lenses so my days are mostly a pain free miracle.

I don't go out other than to necessary appointments and grocery shopping. Constant feeling of irritation which makes it difficult to feel up to doing anything socially as my eyes look terrible. I no longer can wear any eye makeup and just feel so hideous.

I cannot read or use screens. I am frequently uncomfortable.

it's a hassle to when I'm tired to have to compress my eyes, an expense to purchase OTC eye drops and spend the money on restasys, My insurance pays for part of it but it still adds up.

Always carry eye drops, uncontrolled blinking in social situations, have to use hot compress, must wear sunglasses ir safety glasses when outside or working on projects to keep debris out of eyes

It has become very difficult to perform my work duties. I've always loved to read and now I rarely read due to my eye issues. I used to shoot and no longer do, as I worry about safety. I try to not drive at night and stay away from large traffic areas.

I use OTC drops every hour (sometimes more) during the day, and take prescription drops 2x/day. I use a gel and moisture goggles overnight, and take various supplements daily.

No choice but to grind and bear it.

I am lucky. I am regular about using overnight ointment and drinking lots of water. But I've scratched my cornea a couple of times, the last time was two years ago. Several years ago it was a bad scratch that led to me stop wearing contact lenses. When I retired I stopped wearing eye makeup.

There is not 1 minute in my life when it is forgotten and/or not felt.

I can no longer read books. Reading was my life. I am not kidding. It was that important to me. Audiobooks are decent substitute but a substitute nonetheless. This is the greatest impact that dry eye disease has had on my life.

I have come up with a way to manage the pain but it is a lot of work and discipline to be able to function at a normal level. Still a good trade off but a lot of work.

I can't be in breezy or windy conditions. Indoor air conditioning can also be a problem. I have autologous eye drops and have to do a lot of planning to figure out how to keep them cold when traveling. I often want to just close my eyes and my dry eyes make me feel tired. I spend a lot of valuable time "caring" for my eye condition. I can't read books as I used to; I have to do audio books now. I have to be very cautious about screen time.

I do anything I want, but I am uncomfortable most of the day, and especially first thing in the morning. My first question in the morning is always whether I shut off my alarm clock or put in eye drops first.

Great difficulty driving (especially in the sun), great difficulty being in many indoor environments (including work environments)

Unable to read at night. Have to wear goggles outside and inside when fans are running. I avoid air flight due to dry eyes.

Drastically reduced it

It has controlled my activities and decreased my quality of life immensely

Constant eye discomfort except when asleep.

Cant see at times

Constant use of eye drop and warm compresses

When I experience a flare-up, I have no quality of life. Even if the pain is not severe, it is unrelenting, making it hard for me to enjoy my life. I enter a mode of constantly trying to distract myself from the pain. It is difficult for me to socialize with friends when I am in this state because I am preoccupied with my pain and the emotional support I need from them is more than they can provide. I become a burden on my friends and family.

How has dry eye impacted you emotionally? 

It's frustrating when I have to prepare specifically for activities that I know are going to impact my eyes such as just being outside in the sun or riding ATV's. But after applying good information from your foundation to my prep and just learning from trial and error, I've made great strides and improvement so I'm not as impacted as I once was. I can wear eye make up occasionally and now that I no longer have to wear glasses after cateract surgery, I can wear regular sunglasses instead of "overs" that made me feel like my grandma (no offense, I found some cute versions and I didn't really care what people thought as long as I had relief from pain).

It's very frustrating. Sometimes I have to leave places to go home and rest my eyes. Not often but often enough that it bothers me enough to say it.

I have been pretty good at being resilient and switching to my other interests (writing, reading, photography). Unfortunately I now have almost no income because art and music provided that and both involve vision and often being outside and where we've built our house is dry and breezy most of the year. Our house has a relatively long hall & stairs, so I can exercise indoors. But I've always loved nature and it's really depressing if I allow myself to think about it to not be actively involved in the work I most love and which everyone assumes I still do.

before cequa was wondering if i could continue

Dry Eye Disease extremely impacts my life emotionally. There's a constant worry about eye health and deterioration of vision. It is very scary not knowing what the future holds. Emotionally, it is very difficult always living life with a hourly focus on eye needs and eye health requirements ensuring medication compliance.

At times, but it's usually cause I have so many other things going on, or the fact that I can't sleep. So yeah, it all drives me crazy. Makes me not want to use any of the drops at all. It's such a hassle.

My world seems smaller. I cannot read a newspaper or magazine. I can’t identify birds. I don’t enjoy the beauty around me, because my vision isn’t clear.

I was OK with dry eye for most of my life. I was diagnosed in my 20''s. But now as I am getting older, my vision is worse and my dry eyes feel worse and require more work to take care of them. I feel depressed about my vision and bothered that my eyes don't feel right.

I have tried every treatment possible for meibomian gland dysfunction, and have never had a positive response. I have had this external disease since I was 12 years old.

It’s stressful all the way around and can be depressing

It's just a frustrating condition that will be with me for the rest of my life. It is something that requires maintenance everyday, many times per day.

Gets me down

Was scary and depressing -- having such blurry vision and lots of pain in both eyes. Am doing much better now due to my eye treatments (ongoing).

I am irritated when my eyes are irritated. I have to focus to remain kind.

Frustration

I had to find support, which I found by participating in your monthly online support groups. I also learn so much from listening to everyone. I find that I learn more from members of the support groups then from doctors that I see for my conditions.

Quite a lot . I can not look forward to. happiness.

Difficult to interface with others due to need to infuse drops frequently

It's awful knowing I'll never see clearly again. That the fuzzy, blurry, fragmented haze is my forever vision. Scleral lenses help, until they get foggy and uncomfortable due to my allergies causing mucus that gets on, and trapped under, the lenses. I get depressed thinking that I can't be a photographer anymore because I can't see properly to line up a shot. At the same time, I'm grateful for the vision I do have, because I didn't know if I would even have this at one point

Frustrates me.

Minimal

I get discouraged

I am constantly aware of my eyes and the issues there and it makes me very sad

I have constant discomfort because of dry eyes. The scleral lenses help but it never goes away.

I tire easily and don't go out as much.

Always aware of this all day long. Sometimes I don't feel like going out. It could be the sunshine or the constant feeling I always have in my eyes. It is very tiresome.

Anxiety and isolation

My life as I knew it, changed, dramatically. The worst is not being able to drive and being dependent on others.

Frustrating living with pain

It can be very disheartening when solutions don't work.

I am unhappy with the symptoms and the limited treatments, but emotionally, I am on.

It is frustrating knowing I could have avoided dry eye if my ophthalmologist mentioned my MGD and blepharitis previous to my Lasik

It is a daily hassle and it is hard to pay for them which means I forego other things.

nil

I hate how my eyes water in certain environments - especially air conditioning. I hate not feeling like I look my best. I hate not being able to get nighttime gels that last through the night (not ointments, the Systane and GenTeal gels, that appear briefly on shelves and then disappear for months).

It's created extreme daily fatigue and occasional headaches due to frequent difficulties keeping my eyes open.

Depressed

In the beginning I was very depressed and struggled with bad anxiety. I still do but has gotten better. Dry eye can cause a lot of emotional stress in life and on the body. It is not a one thing cures all situation and can be draining having to try and try until you find a tiny bit of relief.

def depressions, sadness, stages of grief.

It's frustrating to feel pain every time you blink, because you can't just stop blinking or take medication to dull the pain. It's concerning to know that there are visible physical exam signs of clogged glands, tear deficiency, and spots on my cornea that could affect my vision later in life.

I get distressed situationally like when I’m in someone else’s home or car and the heat or AC is a problem for my eyes.

Losing the ability to see clearly, to see without pain, to be able to be outside in bright sunlight, to be able to drive at night without being blinded by oncoming headlights, to be able to drive to see my son 5 hours away, to swim in the ocean, to travel having to carry extra equipment and liquids, to have to factor in extra time every morning and evening for eye and lens care , to having lost smell and taste has taken a huge toll on my mental well-being. I can no longer make new memories based on my senses or recall old ones. I struggle with constant discomfort.

With decades of dry eye disease, my eyes have morphed into something I do not recognize any more - much sadness

Isolation because unable to wear lenses many hours in the house, depression.

Not very much. Just a mild inconvenience. Blepharospasm has been more of an issue.

Feel less confident because people stare at my red, swollen or pinched eyes. Can't wear make up anymore.

It feels as if I am in free fall without a guide. If not reversable, but treatable, I am impatient for a symptom relief.

I think that pain is just emotionally draining leading to being very tired.

No self-confidence and always embarrassed at how bad my eyes look

Often frustrated, sad , hopeless.

none

I feel extremely self-conscious about how my eyes appear.

It's hard to bring and use eye drops at work and is awkward running into coworkers in the bathroom while I'm using them.

I envy people who never give their eyes a second thought.

Years ago it was a concern, now it is routine. The most impact is not being able to take a spontaneous nap or read a book and turnover and turn out the light. I have to always put in eye ointment.

It is draining

It is very upsetting to not be able to read. Plus, the constant irritation or pain takes a toll.

Until I had found a way to manage the pain (and fatigue that comes with it), it was frustrating and easy to feel fatalistic about it - like nothing would make a difference. I persevered to get to a place where it doesn't have that impact but it took time to get there.

It's better now but I can get quite depressed as there is no cure for dry eye. I have tried lots of procedures and eye drops and spent a lot of money for little in terms of results.

It hasn't bothered me emotionally.

Depression, hopelessness, despair

Feel frustrated and angry that many of the recommended treatments are not covered by insurance.

I can’t wear makeup, have to wear my sunglasses whenever I’m outside or under bright lights because of glare, can no longer drive at night, and am in constant pain. This has depressed me profoundly and made me feel weird and different.

May make depression diagnosis worse.

Cant forget about it

It's a bother

When I was at my worst, I was suicidal. Chronic pain from dry eye takes the desire to live away from you. Severe dry eye is incompatible with happiness.

How has dry eye impacted you emotionally? 

It's frustrating when I have to prepare specifically for activities that I know are going to impact my eyes such as just being outside in the sun or riding ATV's. But after applying good information from your foundation to my prep and just learning from trial and error, I've made great strides and improvement so I'm not as impacted as I once was. I can wear eye make up occasionally and now that I no longer have to wear glasses after cateract surgery, I can wear regular sunglasses instead of "overs" that made me feel like my grandma (no offense, I found some cute versions and I didn't really care what people thought as long as I had relief from pain).

It's very frustrating. Sometimes I have to leave places to go home and rest my eyes. Not often but often enough that it bothers me enough to say it.

I have been pretty good at being resilient and switching to my other interests (writing, reading, photography). Unfortunately I now have almost no income because art and music provided that and both involve vision and often being outside and where we've built our house is dry and breezy most of the year. Our house has a relatively long hall & stairs, so I can exercise indoors. But I've always loved nature and it's really depressing if I allow myself to think about it to not be actively involved in the work I most love and which everyone assumes I still do.

before cequa was wondering if i could continue

Dry Eye Disease extremely impacts my life emotionally. There's a constant worry about eye health and deterioration of vision. It is very scary not knowing what the future holds. Emotionally, it is very difficult always living life with a hourly focus on eye needs and eye health requirements ensuring medication compliance.

At times, but it's usually cause I have so many other things going on, or the fact that I can't sleep. So yeah, it all drives me crazy. Makes me not want to use any of the drops at all. It's such a hassle.

My world seems smaller. I cannot read a newspaper or magazine. I can’t identify birds. I don’t enjoy the beauty around me, because my vision isn’t clear.

I was OK with dry eye for most of my life. I was diagnosed in my 20''s. But now as I am getting older, my vision is worse and my dry eyes feel worse and require more work to take care of them. I feel depressed about my vision and bothered that my eyes don't feel right.

I have tried every treatment possible for meibomian gland dysfunction, and have never had a positive response. I have had this external disease since I was 12 years old.

It’s stressful all the way around and can be depressing

It's just a frustrating condition that will be with me for the rest of my life. It is something that requires maintenance everyday, many times per day.

Gets me down

Was scary and depressing -- having such blurry vision and lots of pain in both eyes. Am doing much better now due to my eye treatments (ongoing).

I am irritated when my eyes are irritated. I have to focus to remain kind.

Frustration

I had to find support, which I found by participating in your monthly online support groups. I also learn so much from listening to everyone. I find that I learn more from members of the support groups then from doctors that I see for my conditions.

Quite a lot . I can not look forward to. happiness.

Difficult to interface with others due to need to infuse drops frequently

It's awful knowing I'll never see clearly again. That the fuzzy, blurry, fragmented haze is my forever vision. Scleral lenses help, until they get foggy and uncomfortable due to my allergies causing mucus that gets on, and trapped under, the lenses. I get depressed thinking that I can't be a photographer anymore because I can't see properly to line up a shot. At the same time, I'm grateful for the vision I do have, because I didn't know if I would even have this at one point

Frustrates me.

Minimal

I get discouraged

I am constantly aware of my eyes and the issues there and it makes me very sad

I have constant discomfort because of dry eyes. The scleral lenses help but it never goes away.

I tire easily and don't go out as much.

Always aware of this all day long. Sometimes I don't feel like going out. It could be the sunshine or the constant feeling I always have in my eyes. It is very tiresome.

Anxiety and isolation

My life as I knew it, changed, dramatically. The worst is not being able to drive and being dependent on others.

Frustrating living with pain

It can be very disheartening when solutions don't work.

I am unhappy with the symptoms and the limited treatments, but emotionally, I am on.

It is frustrating knowing I could have avoided dry eye if my ophthalmologist mentioned my MGD and blepharitis previous to my Lasik

It is a daily hassle and it is hard to pay for them which means I forego other things.

nil

I hate how my eyes water in certain environments - especially air conditioning. I hate not feeling like I look my best. I hate not being able to get nighttime gels that last through the night (not ointments, the Systane and GenTeal gels, that appear briefly on shelves and then disappear for months).

It's created extreme daily fatigue and occasional headaches due to frequent difficulties keeping my eyes open.

Depressed

In the beginning I was very depressed and struggled with bad anxiety. I still do but has gotten better. Dry eye can cause a lot of emotional stress in life and on the body. It is not a one thing cures all situation and can be draining having to try and try until you find a tiny bit of relief.

def depressions, sadness, stages of grief.

It's frustrating to feel pain every time you blink, because you can't just stop blinking or take medication to dull the pain. It's concerning to know that there are visible physical exam signs of clogged glands, tear deficiency, and spots on my cornea that could affect my vision later in life.

I get distressed situationally like when I’m in someone else’s home or car and the heat or AC is a problem for my eyes.

Losing the ability to see clearly, to see without pain, to be able to be outside in bright sunlight, to be able to drive at night without being blinded by oncoming headlights, to be able to drive to see my son 5 hours away, to swim in the ocean, to travel having to carry extra equipment and liquids, to have to factor in extra time every morning and evening for eye and lens care , to having lost smell and taste has taken a huge toll on my mental well-being. I can no longer make new memories based on my senses or recall old ones. I struggle with constant discomfort.

With decades of dry eye disease, my eyes have morphed into something I do not recognize any more - much sadness

Isolation because unable to wear lenses many hours in the house, depression.

Not very much. Just a mild inconvenience. Blepharospasm has been more of an issue.

Feel less confident because people stare at my red, swollen or pinched eyes. Can't wear make up anymore.

It feels as if I am in free fall without a guide. If not reversable, but treatable, I am impatient for a symptom relief.

I think that pain is just emotionally draining leading to being very tired.

No self-confidence and always embarrassed at how bad my eyes look

Often frustrated, sad , hopeless.

none

I feel extremely self-conscious about how my eyes appear.

It's hard to bring and use eye drops at work and is awkward running into coworkers in the bathroom while I'm using them.

I envy people who never give their eyes a second thought.

Years ago it was a concern, now it is routine. The most impact is not being able to take a spontaneous nap or read a book and turnover and turn out the light. I have to always put in eye ointment.

It is draining

It is very upsetting to not be able to read. Plus, the constant irritation or pain takes a toll.

Until I had found a way to manage the pain (and fatigue that comes with it), it was frustrating and easy to feel fatalistic about it - like nothing would make a difference. I persevered to get to a place where it doesn't have that impact but it took time to get there.

It's better now but I can get quite depressed as there is no cure for dry eye. I have tried lots of procedures and eye drops and spent a lot of money for little in terms of results.

It hasn't bothered me emotionally.

Depression, hopelessness, despair

Feel frustrated and angry that many of the recommended treatments are not covered by insurance.

I can’t wear makeup, have to wear my sunglasses whenever I’m outside or under bright lights because of glare, can no longer drive at night, and am in constant pain. This has depressed me profoundly and made me feel weird and different.

May make depression diagnosis worse.

Cant forget about it

It's a bother

When I was at my worst, I was suicidal. Chronic pain from dry eye takes the desire to live away from you. Severe dry eye is incompatible with happiness.

How has dry eye affected you financially? 

Dry eye drops aren't cheap, and I go through a lot of them with the night time gel, and keeping a bottle in my purse and one in my bathroom. But I'm so glad that I've found things that are working.

Besides additional money spent on dry eye solutions, the ocassional mybo and other treatments help temporarily but are worth it.

Insurance and later Medicare, and coupons for OTC products help a great deal, but not being able do my work is a huge financial problem. I am self-employed and used to being frugal but my now-deceased parents' extra-long lives and need for inhome care used up my savings and what I get from Social Security after Medicare deductions is a tiny amount and goes toward business/PR expenses so I can keep a little income trickling in.

multiple doctors, prescription cost, loss of function

Dry Eye Disease has an extreme negative impact on me financially. Serum eye tears, Meibo, Xiidra, Ivizia, Tryptyr, Hylo Optase Ointment, eye masks, Ocu Soft Lid scrubs... monthly expenses are overwhelming. I also fly to Johns Hopkins for expert medical treatment. These costs of hotel, food, flight and rental car adds up quickly.

For awhile insurance wouldn't pay. I'm retired and on Medicare with Aetna as my supplement. we had to change medicine so they would pay. One of the drops is an over the counter which is not necessarily high by itself, but with everything else, it's over whelming. I'm on a fixed income.

The medicine/drops/procedures are expensive and should be covered by major medical.

Luckily I have a good health insurance. But the costs for drops is high and I use a lot of them! I keep trying different ones which is expensive, and the ones that don't work out are waste of money. I have to go to 2 eye doctors for my eyes and that causes more copays. I was referred to a specialist because of my condition for refraction and the cost wasn't covered. It is an expensive, chronic disease.

Initially, I paid for every treatment not covered by insurance. I also paid to travel to see physicians who specialized in this disease.

Prescription medication and other treatments (autologous serum drops) are particularly expensive. Some of the drug manufacturers have programs for reducing costs but they are eligible with Medicare.

I have had to purchase many of the drops I use out of pocket, as well as pay for procedures that are not covered by insurance. I have purchased glasses that block wind, a low level light mask, Nu Lids scrubber, heating eye mask, as well as daily over the counter drops that I use multiple times/day alongside with my prescription drops.

Retired so get a pension but have to buy certain treatments.

I am lucky that my health insurance covers some of the costs (exams, scleral lenses). Unfortunately, the drops I use are not covered at all by insurance.

Drops made from my own blood plasma for at least 5 years were hundreds of dollars not covered my insurance. Those were in addition to regular over the counter drops.

Longer worktime

Many of the treatments that are recommended for dry eyes are not covered by insurance. Even several of the doctors that I have seen do not take insurance or are out of network

some of the prescription eye drops especially Xiidra have been difficult financially

The treatments for MGD are not covered by insurance and they are not guaranteed to work for everyone. Giving even one of them a fair trial can cost well over $1000

N/a

scleral lenses and associated solutions, equipment, and sleeping masks are expensive and limited to few sources

All the OTC drops and treatments are incredibly expensive, as well as the gas for multiple trips to various doctors and specialists, some 3 hours from my home, several times per week at the beginning.

Contributed to stopping my career progression so I earned less money than I could have while I worked.

Minimally

I have to.budget for it, but can manage, at least so far.

The sclerals along with the other needed prescription medication, drops, cleaning/disinfecting products are expensive and not covered by insurance. It amounts to thousands of dollars a year and it was probably why the Dry eye Clinic did not mention them to me. I had to ask about them and they, of course, were very happy I wanted to get some.

I paid for my scleral lenses and eye drops. I was getting Celluvisc through the Pharmacy which I don’t have to pay for but they stopped carrying it a few months ago. Celluvisc helps a lot so now I have to pay out of pocket.

Eye drops/prescriptions, doctors visits etc. Cannot take as much accounting work to limit screen time.

I don't know how many masks I have right now in my closet that I don't use. None of them work. And, they are very expensive. Also, don't even get me started about the cost of drops. Most don't work, BUT they are all expensive. Also, the IPL's. lipiflow, etc., etc. etc. Most of these procedures are not covered by insurance and they don't work. Money down the toilet. The insurance companies should wake up. Dry eye disease is just as debilitating as other chronic diseases that are covered by insurance. For instance, weight loss drugs COVERED. And, Meibo owned by Bausch and Loumb,NOT covered. What a rip off.

The drops and lens supplies are so expensive not to mention non covered items such as IPL

Thank God I have Medicare and good insurance because I am retired.

Spend money on drops and gels and serum drops and scleral lenses with all their needed products

My vision insurance (EyeMed) covered my scleral lenses (visual improvement qualifier) completely, saving me $1300 for the lenses. All of my prescriptions have been covered by my insurance after a prior auth and had copay assistance avaliable.

Procedures to addrsss, like to open oil glands, etc are not covered by insurance and are expensive. Prescription eye drops are also expensive and require large copay.

It is not insignificant the amount of yearly investment I have to do for my dry eye maintenance. Luckily, I can afford it, but I got LASIK to avoid the long term costs (and have comfortable, good vision) in the first place

$2200 for 2 lenses every year is a lot!

Cost a lot to try everything on the market …next promise .

I was originally prescribed xiidra, which made a huge difference. When it was no longer covered by my insurance, my ophthalmologist changed my prescription to reclast. Still ridiculously expensive, but at least some of it is covered.

It has added additional monthly expense maintaining eyedrop medication's, doctors visits, and exploring other potential remedies at a cost.

Not

I am blessed to be able to afford my treatments especially with my insurance but it is very expensive having to pay for boxes and boxes of eyedrops as well as treatments and specialty drops.

IPL/RF and expression def isn't cheap - it SUCKS there is no medical code docs can use. Drops aren't too bad

Although medications are usually covered by insurance, I really need scleral lenses to get better relief, which are at a high cost. Saving up for those has proven exceptionally difficult.

I spend approximately $30 per month on eyedrops that work best for me but are not covered by insurance.

The local doctors where I live are not trained, nor equipped to assist with my illness, so I travel 3.5 hours each way to a teaching hospital to get the care I need. The eye procedures done usually make it impossible for me to drive that day, thus I need to stay overnight (think gas/tolls/hotel/parking/meals). I pay for the travel expenses out of my own pocket. In addition, none of the drops/cleaning or maintenance liquids required for my lenses are covered by insurance.

Cost of eye drops is not cheap. And cost of special prescription eyedrops is prohibitive - thousands of dollars - which is outrageous

Lenses cost $5000 a pair & were not covered by insurance in addition to OTC drops, gels, solutions for lens fill & heat masks. There were many days I was unable to work. Medicare finally covered 1 pair per year but if lost or broken out of pocket full price.

No affect financially.Do

I've tried tons of supplements, drops, ointments, compounded hormones, etc. Over the course of 31 years this has cost me thousands.

To use the refresh otc four times a day, means one packet of 30 lasts a week. It gives me partial relief, but to buy a month's worth is indeed costly. So yes, it is expensive as are the other meds I have tried .

In the beginning PROSE lenses were not covered (2009) - so mostly I paid out of pocket for my lenses. I did fight the insurance companies, sometimes successfully and sometimes not. Now I'm on medicare so I can receive one lens per eye each year! I also pay out of pockets for serum tears - every 6 months.

VERY MUCH as I have to spend a lot of money on warming masks, drops, saline to rinse my eyes out in the morning, silicon masks, eyelid wipes and appointments every four weeks to have the eyelashes growing into my cornea plucked.

Cost of non insurance covered tests and treatments.

the supplies can be not costly one at a time but they add up.

Spending extra money on high quality omega 3’s

Buying OTC drops, goggles and patches is very expensive.

All the prescriptions, supplements, and eye drops/goggles add up.

None

The overnight ointment is expensive and each tube only lasts about one week.

So many of the OTC products are out of pocket, medicines not covered by insurance, and significant visits to doctors, which require gas, parking, and co-pays.

Not at all.

I probably spend $10 - 15 k a year to manage it between prescriptions (nothing covered by insurance), doctors appointments, OTC eye drops, masks and other equipment. I can afford to do this but that is not available for most.

I am fortunate to have the funds to do all the experimenting I have done. But it's mostly money down the drain.

I buy OTC and prescription eye drops, but prices have not been unreasonable. Now, my rx eye drops would be very unreasonable if I didn't receive a manufacturer's discount.

Within a year and a half I've paid thousands in treatments and experimentation with specialty eyewear.

Not bad, but that’s because I can’t afford treatments.

I spend a significant amount on my condition, including scleral lenses--thousands of dollars a year. I'm fortunate that I can afford to do that without it affecting my ability to support myself but the cost is huge and none of it is covered by insurance.

I have spent tens of thousands of dollars on doctors, procedures, and horribly expensive medications and apparatus.

I can afford treatments w/o difficulty.

Buying drops

I spend a lot of money going through different eye drops OTC and prescription to deal with dry eye issue

Every few months I pay hundreds of dollars out of pocket for eyedrops made from my own blood. These are one of the best treatments for regrowing the corneal nerves and improving ocular surface disease but, bafflingly, they are not covered by insurance. I have also flown out of the state and out of the country to be seen by specialists with the ability to provide more advanced diagnostics. All of this has added up to thousands of dollars spent and weeks of medical leave taken. If I didn't have a good safety net and a generous time off policy from my employer, I never could have sought out the treatments which improved my condition and ultimately saved my life.


In the last 12 months, how much did you spend on dry eye? If you’ve spent more in a prior year, list the highest you’ve spent.

I have no idea, but just guessing I would bet that I've spent at least $500 - $700 in a year due to frantically trying to solve my pain issue and help with evaporation. Perhaps in general I spend about $500 now.

I've spent just shy of $600 each year.

I have not kept records specific to dry eye expenses. My husband has taken over paying for what Medicare doesn't cover. So he pays the Medicare deductible and the Medicare Part D deductible for prescriptions (Cyclosporine (Restasis) vials)and the OTC expenses which involve multiple regular purchases (Avenova, TeaTreeOil eyelid wipes, Systane PF Vials...). OTC probably comes to about $50.mo.. I'm not sure how to add these up since the deductibles keep changing, as do the prices.

1000 2500

I don't know a dollar amount but I've spent a lot trying various sleeping masks, special glasses etc. (Plus eyedrops).

2025 Total: $19,000.00 $15,000.00 includes flights, rental car, hotel, and food $4,000.00 for prescriptions, OTC medications and other treatments.

Honestly I don't even know

Approximately $300

I don't know, but I would say that I spend $100 every 3-4 months to buy eye drops and ointments alone. This does not include the doctors copays or any special goggles, wipes, etc that I try.

I used to see my ophthalmologist twice per year, but he has retired. The cost of a visit was $650, but insurance did cover 80% of the cost.

$2500 - 3000

I would estimate $5-8,000/year for procedures that are not covered by insurance.

£1,500

$1,500-2,000

$1000

200

$1500

unsure

$2000

N/a

400

Approximately $550

5 or 6 thousand dollars including travel to Boston for PROSE lens and supplies.

$2000

The highest was $2,645.33. i.e., I wish I could take a shower with my lenses on $1399.58 for OTC stuff, $180 for Cequa and $1,065.75 for new sclerals

Last 12 months, I have spent ~$100.00 In 2024, I bought Zen lenses - $2000.00 plus solutions

Rather not say.

I would guesstimate the $3,000-$4,000 range.

7,000 which excludes drops

I have probably spent 1600 since Jan 2026, I have met my Medicare deductible for this year in June

$2000?

$200 - only OTC drops since everything else was covered with insurance.

Hard to say, maybe 40-50 hours.

I've spent at least $1500 on my dry eye in the last year. For my country, that is significant for a mild chronic disease

$3000? Hard to know as I just buy what I need.

Well over 200

several hundred $100. I don't know the exact amount. $79/month just for Tryptyr

No idea

Not sure the exact amount but maybe around $2,000 to $3,000 a year. In the beginning when doing IPL and lipiflow the cost was probably around $6,000.

3000 including RF/expression, drops, doc appts,

Maybe a few hundred dollars, but the scleral lenses I need are $2000, plus monthly supplies.

$360

Approximately $1700

Had lipiflow procedure done c- $1,500.00, prescription eyedrops - over $900.00 - over the counter eye drops - over $30.00 every time, eye lid scrubs - $ 20.00 - bruder eye mask over $20.00 - just to name a few. -living on a fixed income - so much is spent just on my eyes

$8000. Before Medicare covered the lenses. Now $3000.

Don't know. I don't keep track of that, but would estimate $20-40 per month.

€700

Cannot give exact figure, but with meds and eqjuipment, I figure at least several hundred dollars. And still they burn

I buy so much purilens, sclerafil and systane that I really don't know the exact amount. I also keep at least a 4-6 month supply in case any of my liquids become hard to get. I also buy special soap, occusoft for blepharitis and various other products, including serum tears which I know costs $1400 out of pocket per year.

TOO MUCH

15,000

around 700 dollars ,maybe

$10,000

$400

Approximately $1,550.00

$2000

Next to nothing because nothing helps more than a short while.

Easily close to $1,000

Approximately $6,000 ( not covered by insurance)

Not sure but I would guess $750

Probably about $12 k in past year. Projecting forward it will probably be $15 k.

$5000

This question is tricky. I have scleral lenses for vision issues, but they do worlds for my dry eye, and I wouldn't want to be without them for that. So I will break it down two ways. 1. Money spent on products strictly because of dry eye: $300, best guess 2. Money spent on scleral lens-related items, including for dry eye strictly: $1000, best guess

~$8000

$750

About 10,000.00

$800

£50

IPL, many eye drops, supplements, medication, ponctual plugs, doctor etc

$200

$200-300

Probably $10,000

What's one dry eye problem you'd like to solve for yourself? What would it take to solve this problem? (E.g. I wish I could watch TV, drive, take walks again)

The only way

I wish I didn't have to deal with the dry eye situation from my CPAP machine. I've had the pressure turned down and am using the appropriate mask to help alleviate the symptoms, which has definitely helped, but I just wish I didn't need to use a CPAP. The other implant alternatives aren't suitable for me so I'll continue down this path.

I wish I could see better. Dry eye makes my vision blurry.

Info/knowledge. Most doctors seem to know almost nothing, or have old information about dry eye. Also, I am very worried about cataract surgery that I will eventually need...for that reason! Will the doctor who does it understand the dry eye risks?

After Tear Care yearly and other treatments and Cequa I can function normally

I wish I could get better visual acuity.

I wish my Meibomian Glands functioned and my eye lubricated themselves so I can travel without medications/ice for storage. I don't think there is a solution to this problem. However, I am blessed that there is treatment available and I am able to seek treatment from experts.

Wish I could always feel I could drive, if I forgot my drops. The last thing I would ever want to do is hurt someone or myself. So I don't take the risk. It would be nice if I just had one medicine that I could take, like 3 times a day not 8.

I wish I could feel confident driving and be able to read without my eyes giving out.

I wish I could read books again without my eyes feeling dry and achy and my vision getting blurry. I don't know - probably new glasses, reading with a close humidifier, using magnification, keeping my eyes lubricated all day.

I wish my edema would resolve.

I would like to have less discomfort and pain and would like clearer vision. It’s impossible to pick one activity since these affect everything

Decrease the eye pain at night which affects my reading. I love to read at night, and it's a struggle most days.

Read

Driving at night -- would require buying a high-clearance SUV or truck (right now I get blinded by the lights from SUVs and trucks.

I am very functional with good eye sight but would like the scratchy feeling to go away.

Learn to remove scleral lens

I wish my eyes were not so exhausted every day so that I could function more like other people.

wear contacts without added dryness/dysfunction

Like to live a normal life.

i have difficulty reading (blurry, irritation). I have tried to do most of it earlier in day

I wish I could see well enough to use my camera for photography. Also, not having the independence of being able to drive is very mentally challenging.

I wish my light sensitivity would end so I could drive further and fish looking into the sunlight to catch more fish.

Wish I could Blink that eye

I wish I could shower with lenses on but have no idea how to make this happen safely.

Be out in the sun - I live in South Texas and it is sunny most of the time.

all of the above. Night and day driving - in sunlight etc. Use PC, watch TV

All of the above. And, SHOP!

Sensitivity to light, smells and air flow. To go swimming, be outside more, drive at any hour I live in moisture glasses and hats

Driving

Scleral lenses have solved many of my issues

I wish my eyesight was not so blurry.

I'd like to be able to sleep again without moisture chamber goggles. Only very specific ones work and they are very uncomfortable to use, since I sleep on my stomach

easier insertion every time

Computer

none

Nighttime gels that are always accessible and safe. Reduce price of the two main prescriptions for dry eyes.

I wish I could comfortably watch TV, drive, take walks, bike ride, travel comfortably and explore without struggling to keep my eyes open.

Takes walks , be outside on a windy day

Screen time and computer time because most jobs require it. I also can't sit at a 9-5 job (i wouldn't want to anyways but if I had to)

I wish I felt more comfortable during the day - eyes are so heavy or tired. What would it take - having RF done more frequently, and it was obvious what drops I should use

I'd love to wear my contact lenses again!

I would like to be able to drive without applying eyedrops that make my eyes photosensitive for a while. I don’t know how to solve this problem.

driving and reading

I wish I could drive safely at night which would require cataract surgery plus new lenses but the surgery cannot be done as my eyes are too dry for the procedure and it could cause worsening of my symptoms.

Prevent corneal abrasions Have a wetting system that would not dry out when wearing scleral lenses.

I'd like to solve the blepharospasm and be outside more and drive more. Dry eye has not been a major issue, just a minor inconvenience.

I wish the dryness would dissipate so I could participate in regular daily activities like being an editor (screen time!), reading, swimming, etc. I haven't found a proper solution; research has to come up with one.

In the middle of the night when I am least alert, how can I keep cpap air fromblowing into my eyes? I seem to mess up the goggles and Saran wrap while asleep and want to figure out how to do it easily so it is working and I can return to sleep.

Flying is an issue for me - I have to decide how far I can fly with my lenses in - I could not fly with them out as it would be too painful. I don't think there is a solution. I also don't swim anymore as I can't get my eyes wet with the PROSE lenses in and without the lenses I would be too uncomfortable outside in the sun/wind. I drive only during daylight hours and I am fine with that.

Would like to drink wine or alcohol socially without severe eye dryness.

I would love to wear eyemakeup but mainly I WANT MY MEIBOMIAN GLANDS TO WORK

Just feel comfortable

just not have to use so many drops and compress frequently.

I wish my eyes were not so bloodshot

I’m just living with it

I wish I could read for more than a few minutes. I have an extensive library and I can't utilize it.

I wish I could sleep at night without the gel and goggles.

I'm short and have to look up to the other speaker in conversation. I hate to swivel my eyes as well. Having social interactions is not fun on bad eye days but I just persevere.

Take a spontaneous nap or read a book and turnover and turn out the light. I have to always put in eye ointment.

I wish I could cry tears. Dry crying when I am emotionally upset is awful because there is no emotional relief.

I would dearly love to be able to read again.

Flying on airplanes without a major cornea erosion episode - and I have figured out a way to solve it, but until I did it was very limiting to my business and personal life. (Solution - OTC artificial tears every 30 minutes while on the plane and moisture chamber goggles with complete seal - means I can't see but it is a worthwhile trade off. Prescription moisture chamber goggles with a complete seal would be great. Haven't found any yet)

I wish I could hike when it's windy. I don't know how to solve this problem.

I wish I could have my car AC vents blow on me on hot days, and my ceiling fans. I think swimming goggles would do it, but I don't want to live in those. Eventually I want to buy those moisture shield glasses.

I wish I could tolerate sunlight.

Be able to read at night.

Reduce mucous threads in my eyes that are uncomfortable and interfere with my vision

I’d like to be pain free

Would like to resolve burning eyes. Can do most things still.

I wa to see clearly at all times. Difficult to read

I actually improved 80% by improving my diet: cutting gluten and dairy. But I'd love to improve the remainder 20% and get 100% "cured". I wish I could forget about my eyes.

sit comfortably in air conditioner in restaurants and other places.

I wish my eyes would not feel gritty towards the end of the day

I wish I could wear contacts once in a while, but they usually cause me pain. I am not sure whether my eyes will ever be healthy enough for me to wear contacts again. I would also like to be able to wear makeup, but most products irritate my eyes now.

What do you want the public to know about dry eye (or a related condition you've been diagnosed with)?

That screen time whether it's a computer or smartphone has a real impact on eye health.

It may sound like a small problem but it can impact daily living.

I want the public to know that dry eye is a real, life-altering, painful disease. It is common, and most doctors do not have current information regarding it. You have to be your own researcher and your own advocate. Know that, and do it!

it is very painful. please allow more insurance coverage for Tear Care and prescription meds like cequa abd others

Dry Eye Disease is more than just Dry Eyes. My Dermatologist said, " you only have dry eyes, that is not really a problem." The medical profession and public needs educated that Dry Eye is debilitating. Eyes without moisture can lead to corneal erosion, affects vision, causes pain and redness. There is so much more involvement and effects to eye and eye health than just dryness. My vision changes every day. Some days, my vision is better than others. Some days, my vision is worse.

I had o idea the impact it actually has on your life, I always thought it was not big deal when I would hear about it. I was wrong, it can be a big deal and take your freedom.

I am not one to complain. People probably don't know I have dry eye. But it does make a big difference in what I am able to see and how I am able to perform work. It is a chronic condition with no cure.

People with dry eye are always aware of their environment and need to structure the environment so that their eyes can support it.

Dry eye can be quite debilitating and affect your day to day quality of life.

That it's much more involved and painful than a "dry eye". It's moderate to severely painful unless maintained daily.

That is very disabling and painful

How debilitating it is; and how medical insurance does NOT cover my primary treatment.

Try Xdemvy to kill dermadex mites. That helped me feel much better and is worth the expensive.

Not a weakness

I want them to know that for so many dry eye is more than just dryness and treatment with over-the-counter eye drops.

Fans are not for everyone

How debilitating it is.

Dry eye persons are sensitive to wind, particles, and bright liight.

How painful it is!

Dry eye is a life changing condition that affects work and family members lives.

Frequent eyedrops are just normal for me, also pulling down my eyelid. I'm not being weird, just trying to see better.

It is a big problem and takes a lot of effort to live with the condition.

It is a severe problem that affects your daily life.

Easy explanation of our problems. No crazy ads.

Be smart. I developed this disease after cataract surgery. If I had known this type of surgery would lead to this disease, I might have reconsidered having the surgery in the first place. Before the cataract surgery the ophthalmologist told me I had MGD. I asked what is that and he said, just dry eye and walked out of the room. What a fool I was. And, I think a lot of these doctors are in it just for the money.

It’s a combination of things and I feel pain it’s not just an inconvenience

This disease is a life changing event, It’s went from Fuch’s to Crocodile Shagreen, to being dependent on others.

It's not just a "dry eye". It's debilitating.

It can be a lot worse than it sounds, especially when it is severe.

Many people probably suffer from dry eye but do not even know they have it. The eye doctors do not push treatment. You are pretty much left to your own devices to get relief.

Dry eye is like a pebble in your shoe you can't remove. You have to learn how to walk with it, or buy expensive, special shoes so you can walk properly without walking weird. It is annoying and another periodic expense, but can be managed properly with good products

Just more overall!

I wish people understood myopia macular degeneration and the impact it has on me

That it happens often with menopause, and can become worse after cataract surgery

Immediately prior to my dry eye diagnosis my severe eye tearing, watery eyes, was identified as an allergy rather than a prodrome to the dry eye.

It is 24/7

It is extremely painful and takes a toll on your life. There is no cure so it takes time to find the treatment/combo that works best for you. Just because you cannot see it doesn't mean its not real. Corneal neuropathy is described as " pain with no stain" meaning there is real debilitating pain but the doctors cannot see it just looking at you.

Dry eye is not easy. Its a very sad, frustrating, hard, tiring and debilitating disease. It makes us not be who we want because we are nervous to feel awful. It makes you want to sleep alot, makes you second guess what sounds like a fun activity. If you travel you have to think of so much more than just packing clothes. Its sad that in America we can't get access easily to some drugs they can in Europe

It's just as emotionally and physically distressing as a disease of any internal organ (speaking as someone with other chronic illnesses).

That it is a persistent disease and not just an annoyance that goes away like a cold.

It is very annoying when a doctor tells you your vision isn't sharp because you you "probably" have dry eye but not tests are done.

That it is so much more serious than something you can 'fix with some drops', that it can be a debilitating illness, that the costs of care are high and that many doctors cannot provide the help patients need.

It is a serious problem. - it is adisease

The impact on the quality of my life. You are in constant discomfort & at times Severe pain. You eyes dictate what you can do each day.

Blepharospasm doesn't make a person a freak. It can be debilitating.

That it's a very painful and life altering affliction.

It feels like soap or shampoo is in my eyes, burning most of the time.

Between my dry eye, keratoconus, and RCE, I would want people to know what it takes every day for me to have a 'normal" day. From the many drops I put in, the lens insertion and just fighting the elements during the day. I think only my husband really "gets" it!

IT IS A DISEASE!!

How devastating this condition is.

that millions have it and that for many it can be an excruciating way to live. That it can be pricey to take care of it from the eye drops to the rx drops and that one must take time to take care of their dry eye issues.

While it may not be discernable outwardly, it is difficult to go through each day.

It's painful, messy, and annoying.

Cataract surgery is not without risk. My problem is due to it!

More education for the medical community

It is painful. It is felt 24X7. It creates a poor quality of life. It steals from our lives.

Dry eye disease us real and is magnitudes worse that simple eye irritation. And OTC drops are of little help.

It isn't a minor inconvenience but life altering. Also having an incurable disease is really something to come to terms with, especially when so rare that there is no one studying it or working on a cure.

How disabling it is. People who don't have this condition don't realize that because much of our dry eye symptoms are invisible. But the impacts to what we can and can't do are extreme. Plus there is a large mental health component.

It affects everyone, even kids. Your kid might not know how to explain it very well. Maybe they'll describe it as a headache or some other thing that doesn't make an adult think about eyes. Please bring it to their eye doctor's attention for them, especially kids who are less likely to speak up for themselves whether due to age or personality.

It isn't just "dry eyes" and cannot be solved with eye drops. It is extremely complex and the mental harm is almost worst than the physical.

It’s very painful and puts a lot of limits on activities.

It's severe and debilitating and can drastically ruins lives, even leading to suicide.

It’s awful and life changing

It can affect function of daily living.

More help. Just given drops

How severe it can be, how much it can affect quality of life, and the risks of taking accutane, which was a major contributor.

Remember once I have it then it doesn't go away.

There a different types of dry eye conditions and it's a challenge to find the right protocol to mitigate the problem

You can do every single treatment out there, and empty your bank account to pay for them, and still not have a normal life. Also, dry eye is chronic pain.


What do you want doctors to know about dry eye? 

That it is really painful and that patients need to be educated about the tear layers so they understand the evaporative properties of dry eye.

One size does not fit all and when a company lies to you about following FDA guidelines, it's not that the drops are not good for me in particular, it's not safe. (Regenereyes) I know that difference between an unsafe product and an individual's adverse reaction to a product.

I want doctors to know that dry eye is common, real, life-altering and painful...and needs to be considered when prescribing drugs or treatments that may worsen or irritate dry eyes. I want them to have current information about dry eye disease.

It's complicated. Not just solved with artificial tears.

Dry Eye affects daily life hour by hour. Severe Dry Eye requires constant treatment and eye drops to include moisturizing eye ointment at bedtime. Daily vision is affected and the constant worry about future effects on the eyes. I believe general practitioner doctors need a more in-depth study on anatomy and physiology of eyes and how other moisture producing anatomy is affected by Sjogren's.

How frustrating it is to take so many drops a day, to keep up with it and not going crazy trying to. How many times we have to keep going back to the doctor. At my age, I have other things going on as well. But mostly, what is suppose to be my happy years.

i want more doctors to "specialize" in treating dry eyes.

I was lucky to have an ophthalmologist who was willing to think outside of the box and try non-traditional remedies for the problem. Unfortunately, none of them worked for me. He was always kind, compassionate, and supportive, as well as extremely competent. I was lucky to have him for 20 years.

How blurry my vision is even though I can read the eye charts.

I think that there should be more training on dry eye disease in Opthalmology school.

It impacts your daily life

The I have to limit my time on screens. Thus, I prefer not to check-in online for doctor appointments, etc.

They are very uncomfortable even though the eye test for vision is good.

Causes

I want doctors to be able to spend more time with patients when treating them for dry eyes and other related eye conditions. A 10-15 minute appointment just isn't enough time to address all the issues that we have with this diagnosis.

We need to be screened for this regularly! If my MGD had been caught (much) earlier, it likely would not be such a stubborn case now.

How stressful it is.

As eyes dry during day, irritation and pain increases sometimes despite re-hydration measures. This along with reduced vision impacts many activities of daily living and emotionnnnnnal stability.

That ibuprofen can cause crystals to develop in your tear film, which will cause intense pain on top of the already painful conditions (abrasions on top of corneal ulcers) that will delay healing and result in scar tissue.

I want doctors to understand more about dry eye. Having dry eyes means that routine exams cease to exist. Wearing glasses is only the beginning of dry eye treatment.

?

It is a big problem and takes a lot of effort to live with the condition. I would like them to explain how my dry eye problem affects my other eye diagnosis and what can I do to improve my future outcomes.

It is very uncomfortable and most drops do not help.

They are treating humans, not just doing a "job" to make money. (I know because I am an accountant to doctors, Medical practices)

The doctors should be honest with their patients, be it IPL and other procedures that there's the possibility they won't work. Also, quit gouging everyone. Some of these costs are absolutely ridiculous. Also, I would think that any self-respecting ophthalmologist should know a lot about dry eye; more than those of us that suffer with it.

I wish more doctors treated it. That just because they don’t see anything you still feel it

Please go to a Specialist if you suspect you are not being given accurate information. 15 years with the same Dr and got all the WRONG information. I do not accept, “ there is nothing we can do for you”.

Drops aren't going to solve much. Please consider all options.

Many people suffer from the symptoms but have low awareness that they have a condition that can be treated or if the implications of not treating it.

My ophthalmologist doesn't know about moisture chamber googles or glasses. I'm not sure if she even took my blepharitis and MGD into account when screening me for the surgery. I would like for them to take dry eye more seriously when screening people, and how to manage dry eye better when patients look for advice on how to manage it properly. Moisture chamber goggles for when I sleep greatly improved my QoL during the daytime

Same; it's seen as a nuisance and it's much more than that

my doctors are very knowledgeable

Untreated symptoms can make life unbearable.

I would like them to know more than they do know. I have been frequently given conflicting advice.

It is not in my head

Believe your patients when they say they are in pain. Be patient with them and help them to find the best treatment. what works for one patient might not for another. it is okay to get a 2nd or 3rd opinion. do not give up on your patient until they have some relief and can live life more "normal" .

Eye docs need to understand the whole person - allergies, diet, nutrition, eye issues, etc - each doc is a specialsist in their own area, but they need to create awareness that its not and it changes day to day, week to week, year to year

That there are days when I feel like nothing that they're doing for me is helping. The eyes are just dry, dry, dry.

How it is different for different people but a valid concern in all cases.

how annoying it is.

I would like non-specialist doctors to recognize that dry eye is a potentially severe illness with many possible etiologies, and for them to refer patients on to specialists for comprehensive exams and care protocols.

Be more compassionate dealing with dry eye patients. Many of the doctors do not have dry eye problem so do not understand what one goes thru

I think it would help if they were more involved with understanding management & could be proactive in workshops with new treatments & product. I’ve learned more from DEF than any of my doctors.

It's more of a problem than what they realize.

I've found hormone supplementation to be more effective than eye drops - so they should look into this connection more & cooperate with endocrinologists or gynaecologists.

Doctors should refer patients to the Dry Eye Foundation. I jusst found out about it. And when ten years of meds did not work, I wish my excellent ophthalmologist would have told me about special dry eye optometrists- who they are and what to ask.

I have a wonderful doctor who listens and understands that my pain doesn't always correlate with how "normal" my corneas might look on a given day. I would want doctors to listen to their patients even when they don't "see" anything wrong.

IT IS A CHRONIC DISEASE and we need them to do research to help us

Get more knowledge about how to diagnose and treat. Stop competing with one another. Demand insurance coverage. Make it more affordable.

see above

I've been fortunate enough to have had several doctors try to find some solutions for me, I live in a rural community and limited for assistance.

'Just use eye drops" isn't as easy as it sounds. Having to go to lengthy eye appointments 2x/year are expensive and it's hard to take time away from work (especially with dilation and trying to work afterward).

HOW TO CURE IT!

It should be taken seriously and no one patient is like another. Take the time for each situation

Do not minimize it

Don't give up. Offer your patients anything you think might help.

My experience with opthamologists is they default to surgery without data to back up why. With discipline you can find ways to work through it. I don't think opthamologists or optometrists are very well trained in diagnostics to be able to diagnose these issues.

How we rely on them and need very personalized attention to our issues. We need help finding what works for us without spending so much money experimenting.

Telling us that we have dry eye and sending us out the door with a sample of lubricant eye drops isn't enough. It's especially not helpful if those eye drops are preserved, which just makes us worse. Give us those drops, but please bring us back in and ask us what they're doing for us. Help us navigate the dozens (hundreds?) of OTC products. Suggest gels for nighttime, not just ointment. And don't be slow to start us on prescription products if that could help. Ask your pediatric patients about their symptoms, too. Ask more direct questions than you would an adult. For example, ask them what they do first, second, and third right after they open their eyes in the morning. The choice between lamp, alarm clock, and eye drops is real even for them. Screens, fans, and wind are universal experiences. Don't assume their parents know how they're doing. Their parents may not suffer from dry eye themselves to know what to ask or look for, nor might they always see things, especially in teens. Kids aren't going to volunteer info; they need prodding. Fact is, they don't even know their symptoms can be helped! Plus, some kids complain more than others, anyway. The non-complainers are the easy-to-missers. An adult dry eye patient who started out as a missed pediatric patient may complain the least of any of your dry eye patients. They have had lots of experience seeing eye doctors, and no indication that the condition warrants more than a passing mention. That doesn't mean they're not suffering, but they probably need the same prodding as the kids do to start talking. They may think nothing can be done for it just because nothing has ever been offered. You can be the force for change in their lives.

Same as above. And, my doctors diminished the severity of my symptoms because "young people are just getting dry eyes these days." Then, when my condition worsened into neuropathic pain, the same doctor said "a lot of older people have it much worse than you."

Same as above

In addition to the above...How painful it is, how overwhelming it is to try to advocate for ourselves in order to find treatment and achieve any relief.

It’s life altering

Would like additional treatment options for management.

It's common and frustrating

How severe it can be, how much it can affect quality of life, and the risks of taking accutane, which was a major contributor.

It hurts. I wish there was something I could use once a month. I wish there was surgery for it.

Although it's trial and error, supporting patients through the process to find the best products

Soooo many things!! A) Don't be stingy with corticosteroids. It took seeing EIGHT doctors before anyone thought to prescribe me corticosteroid drops. That included Penn's Scheie Eye Center and dedicated Dry Eye and Ocular Surface Center. [If this is going to be used publicly and you'd prefer not to name names, you can say: "That included the eye institute, and even the dedicated dry eye center, of a leading research hospital in my area, one of the best in the world."] Dry eye is fundamentally an inflammatory disease, so corticosteroids should be the first line of defense for breaking the cycle of inflammation, and, crucially, for bringing patients relief. While other treatments exist that address inflammation, they can take months to start working; patients should not have to live in pain for that long. I did not get any relief from my pain until 4 months into my dry eye, because that's how long it took for a someone to prescribe me corticosteroids. Corticosteroids carry risks, but only with long-term use, and a patient's quality of life must be considered. (Though, it's hardly just about quality of life; corticosteroids are an important tool for knocking back inflammation and thus treating dry eye.) B) Take patients' pain seriously. It took only a few short months of dry eye and the ensuing pain for me to become severely depressed and start thinking about ending my life. And many dry eye patients follow through on those thoughts. Doctors who don't take their patients' pain seriously enough and avoid taking the urgent action that this condition demands could be putting their patients' lives at risk -- not to mention prolonging their suffering needlessly. C) Take the time to explain things to your patients. Again, it took seeing EIGHT doctors (including Penn's Scheie Eye Center and dedicated Dry Eye and Ocular Surface Center) before anyone explained to me that the heart of the problem was inflammation. Part of the reason I was so scared when my dry eye started is that I didn't understand the mechanism behind the dryness, and therefore I didn't understand what it would take for me to get better. I am not sure whether this is a genuine knowledge gap among ophthalmologists or they lack the empathy to understand why it would be important to explain to their patients the mechanism driving their condition. 4) Escalate treatments more quickly. One doctor I saw (at a dedicated dry eye center in a leading research hospital in my area) told me she preferred to follow a stepwise approach so that we could differentiate the effect of one treatment from that of another. (It sounded like this was driven by her approach to medicine rather than an insurance provider's requirement -- the options she was asking me to choose between worked by different modalities, and one was not covered by insurance). While I appreciate the logic of such an approach, patients in severe pain from dry eye don't have the luxury of waiting around to see if one treatment will work before trying another. Doctors must treat dry eye with the urgency it demands.

What do you want researchers or industry to know about dry eye? 

That it is really painful and that patients need to be educated about the tear layers so they understand the evaporative properties of dry eye.

For researchers, keep up the good work. For the dry eye industry, stop with the false promises and word smithing to sell your product.

I want researchers to know that the work they do regarding dry eye products is appreciated and I want the dry eye product industry to know that recalls for contamination are huge problems, contamination is a huge worry, and products becoming unavailable for ANY reason, including product changes/updates is a huge problem for dry eye sufferers who depend on them.

please keep researching treatments and cures

Practitioners need to educate patients with early onset of Dry Eye on the importance of using and emphasizing eye masks to prevent Meibomian Dysfunction, on use of eye drops and other self-care measures.. perhaps send out educational pamphlets to physician offices so they will learn the truth of Dry Eye and Sjogren's Disease and how it affects patients. Researchers: I'd like to thank them for their efforts in furthering treatment options for us suffering with Dry Eye Disease. I'd also like to see if there is any studies on regenerating Meibomian Glands.

How can you make it less complicated, 1 eye drop, maybe 3 times a day not 3 different eye drops to total 8 times a day. Then if I don't sleep well I feel I have to use more than 8 time. It's just plain crazy.

I have plenty of tears, but they evaporate rapidly due to the meibomian gland dysfunction. Can you explore treatments to stimulate oil production and to improve the quality of oil so that it can be expressed. Without oil, tears are not very effective.

I think researchers probably understand the need for continued research. I would like the insurance industry to realize that treating dry eyes is essential for people’s health and wellbeing and that they need to include more medications in their formularies. The way people react to different medications is highly variable and some do better than others with a particular medication. Trying to find Medicare Part D coverage gets to be difficult if your particular medication is not covered by a particular plan. And with multiple drugs for other conditions, it becomes even more difficult.

To make eye drops more affordable. Dry eye is not a disease anyone has based on life choices. Ozempic and GLP1's are rampant and there has been a push to help overweight individuals lose weight and improve their condition. Dry eye is not based on any life choices we have made and is not curable. The drops are extremely costly and not covered by most insurance. And then if you challenge a denial, you are denied by a MD that has zero familiarity with dry eye. It's extremely frustrating.

Need very good treatment

Please do more research into the corneal damage caused by many soaps and cosmetics. (See CDC report on cosmetics with common ingredients -- and how they kill corneal tissues.)

Dry eye can become more exacerbated by cataract surgery.

Use of scleral lenses

I want them to know the seriousness of dry eyes and how this condition impacts the lives of so many of us.

Forced air is very drying. what other ways can we use for heating/cooling. for example, radiator heat

I would like them to know that the so~called "cures" do not work.

need better selection preservative-free solutions with less plastic waste

The pain and the emotional and mental toll that it takes on a person, as it affects every aspect of our lives.

I want doctors to understand more about dry eye. Having dry eyes means that routine exams cease to exist. Wearing glasses is only the beginning of dry eye treatment.

It needs better treatment options

Please find a cure - it affects your daily life.

Everyone can be subject to it - and themselves eventually.

Be fair about costs.

How does diet or medicine affect it - preventing at a earlier age

Thank you for for doing your due diligence and helping people like me. I am so grateful for new and improved technology. It gives me hope!

Need products that last longer during the day

The importance of properly educating patients and doctors.

We need more effective treatments and they must be affordable and available.

Everyone has different ways to manage their dry eye. "Universal" dry eye products don't really work. Most products didn't work for me because of my face shape. Only the bulky ones that are so big, they have to fit every kind of face worked for me. More variety would be great. Also, it is very expensive for me to import dry eye products for the us. More reach for different countries would be great.

more research is needed

how it affects those of us who rely on contacts. a daily contact lens great then -12 is needed!

Do more!

I believe each individual has different or reacts differently to eyedrop medication. For instance I've discovered using drops as needed works best for me. I was directed to religiously take them every four hours to "stay my head of the problem"which I believe exasperated the problem for me.

It is a debilitating disease . I guess because it is not cancer , does not seem to have a sense of urgency attached to it

Keep doing studies to find a cure for dry eye and corneal neuropathy. It takes a combo of treatments for anything to help and any new treatment is worth it.

It is true and it is awful. We can still see so people think we are crazy - but we see with pain, with burning, with stinging, with heavy eye lids. If alot is realted to whole body health, study that

That we need more effective therapies that address the underlying cause of the dryness.

I would like them to determine who is most susceptible to dry eye and how to prevent it from occurring in the first place.

when new products come out, we should not be expected to pay thousands of dollars on them. The insurance companies should at least pay something.

For researchers: please know that many patients are doing everything we can to support tax-payer funded research. We are busy speaking to our elected officials and representatives, and our doctors too to spread the word on the importance of this science! For industry: please keep trying to find treatments that will help us live normally where we can enjoy our lives, and be aware that we may forgo medications if they are too expensive.

It is heartbreaking to deal with dry eyes disease - it starts out being a nuisance but in time the look of the eyes change in s negative way

This isn’t just about comfort. Making sure products are preservative free & FDA compliance avoids addition eye related problems.

There needs to be more research on blepharospasm. It's so rare I think it's been put on the back burner. I wish it could be cured. Botox shots help, but don't totally resolve the issue. They only treat the symptoms, not the source.

The same as above

To find out what can make me feel "Ah, relief" and hopefully not have to do this for the rest of my life. And if I should be incapaciated and cannot speak for myself, who will represent my needs? So please keep trying to find effective meds. Many people my age use eye drops but do not find any relief, so it is out there , even if not well know.

I would want them to figure out a way to heal the corneas of those of us with central scars - between my scarring, recurrent erosion, neuropathy, keratoconus, perhaps there will be a drop one day that will not just help us get through our days, but make us better.

PLEASE FIND A SAFE SOLUTION

Same

see above

Research the causes and not just routine solutions.

I would love to take a pill or a one-time treatment to cure this.

Finding a permanent cure will bring you.big bucks! At a minimum immediately consider the huge financial potential gain!

It is a very impacting condition and quite serious for many people

We need a solution

There are plenty of dry eye sufferers out there and the number is sure to grow as the population ages.

It is worthy of study.

The impact to us as previously described (activities we can't do, expense, mental health).

The available scales for dry eye severity aren't an accurate reflection of reality. There are two common ones. One makes me look like I have no problem at all, and the other one makes me look like I'm the worst of the worst of the worst. The reality is in the middle. We need better scores that actually tell us how much day-to-day discomfort someone has, that don't rely on whether the person skips social events and such. We really need more nighttime solutions. Gels that aren't ointments but that don't evaporate, nighttime eye covers that are adjustable to fit even the smallest faces. Kids need nighttime eye things, too, and adult stuff won't fit them. Kids get dry eye, too. Please include them in your research. Package some dry eye products to be attractive to them. Put some cartoons or Frozen characters or something. See if you can develop packaging for eye drops that kids would have an easier time handling. Maybe not toddlers, but 8 year olds should be able to open their own box of eye drops and start a fresh bottle. Backorders cause major interference when we have at last found a product that gives us some relief. Please make back-up plans to prevent backorders.

We are in a rush to get better!

Same as above

How important it is to manage costs and find treatments that can be covered by insurance

They need to fast track something that really eorks

How to solve problem with burning eyes.

Examine eyes more thoroughly

About the fact that in some cases, such as mine, diet and general inflammation plays a huge role.

we need a product that is not expensive and works all the time.

Better descriptions on the ingredients and which problems they address

I'm not interested in another tryptyr or tyrvaya that will make me produce a few tears in the moment and that's it. I want cures for the underlying disease!!!

What do you wish the people in your life understood about dry eye? 

That it is really painful and that patients need to be educated about the tear layers so they understand the evaporative properties of dry eye.

The people in my circle understand that even small problems are big to the person who has them. :)

I wish the people in my life understood why a person who has always loved being outdoors will not always be able to attend outdoor events and that indoor events out of wind or fans or any air movement are now always preferable, or necessary.

My vision fluctuates daily. Eye pain fluctuates daily. It is vitally important that eye drops and heated eye mask treatments are done on schedule daily as prescribed and it is not something that can be overlooked or laissez faire about.

That it is more serious than it sounds.

i can't see as well as they do because of my dry eyes, and it is impossible for me to cry tears, which I wish I could do sometimes.

This is quite a handicapping condition. They should be happy that they have normal eyes and appreciate it if they can forget about their eyes. I am conscious of my eyes every minute of the day.

It’s debilitating.

Most of my family and friends understand that it is a lifelong condition and I do everything I can to help it. I don't complain, I just continue to make decisions to protect my eyes.

How painful it is

How physically painful it is and how it limits certain activities. Also, the challenges of travel with scleral lenses plus drops that must be kept frozen or refrigerated.

Playing board games may be more difficult.

Burning

People in my life do not know how eye related conditions can impact the quality of life. It is almost like an invisible disability. You look normal so friends and family don't understand what you are dealing with. I really think a new name should be developed when a person has a dry eye because it is so much more than that. Plus, many people have dry eyes and can use over the counter eye drops but for others dry eyes can be disabling.

forced air/fans make it worse

I do not think that they could understand how awful dry eyes can be.

sometimes the best solution is simply to lie down, drops or gel in eyes, and detatch from activities for a bit

Same as above

How debilitating dry eye is and how at times it totally incapacitates its victims.

How much it hurts all the time

It is a real problem not just a mild issue.

Have patience.

That's it..........just understand. It seem that I am always apologizing for my disease. And I'm tired, just tired of it all.

When I say I am on pain it’s real and to know the real effort it takes

If you can’t see, you can’t see! Not the deer running in the field, the price tags at stores, stepping up, stepping down, and tripping on objects left out.

Pain makes me cranky, sorry if I get snappy

Not sure. They have it too.

Dry eye needs daily and, at times, hourly maintenance. It is also expensive. There are some things I can't do because of dry eye, like driving with windows open, or have the AC hit my face. People without dry eye don't understand those struggles.

Same; it's seen as a nuisance and it's much more than that

na

Please don’t remark on my watery eyes - I’m embarrassed enough as it is.

How it always is there and I am trying my best to. My biggest issue is getting to other medical appts and taking care of other medical issues

Just because you can't see the pain doesn't mean its not there and or debilitating. Be patient, supportive, and kind.

I wish people in my life understood how much I pretend that things are ok just to make their life easier. I hide, I nap, I plan and I prepare so I can spend time with them

That my dry eye is not just a common inconvenience...its genuine discomfort that can be very distracting, can make me feel tired, and can sometimes trigger migraines.

That it is a disease and likely a work related disease.

they are not interest.

I have an incredible support system much because I talk about my diseases and I show openly all the tools, drops, medication and procedures I have to utilize in order to try to live normally.

Do not know how serious it is

I’m fortunate most of my family & friends are aware how much dry eye affects my life. People tend to think it’s like a headache, far from the truth! Most of my life revolves around my eyes. Managing pain & correcting my vision is alway my concern.

We're not freaks. Have patience with us always having to put eye drops in every few hours.

How painful, debilitating and disheartening the condition is - especially as there doesn't seem to be any real progress (I've had this disease for 31 years and the treatment options have basically stayed the same).

That ifI feel discomfort and sometimes pain, to be kind and help me with some visual tasks.

It's hard to live with and just understand the limitations and issues in our daily lives.

THAT IT IS A CHRONIC DISEASE

How uncomfortable it is

I think they understand.

It is tiring to deal with vision problems - physically, mentally and emotionally. It is hard to ask for help and not feel bothersome.

I guess just have more awareness of it.

It's not a minor nothing and varies greatly n severity on different days and in different environments.

I feel like my people know what I am dealing with

it is not a small inconvenience. We are not making it up.

Just believe me!

Those around me that know I have this disease understand what it means. I'm blessed to have that support at work and at home.

The impacts as previously described.

I wish they knew that, sometimes, I go to social events specifically because I am so uncomfortable, and I just want to be distracted. I don't want to talk about my eyes at those events. I wish they knew that sitting under a vent at a restaurant can be such an eye-stinging experience. Was there another table to have chosen? Those long showers I sometimes take? That's the only time I feel really good. I'm sorry about the water bill, I really am. If I happen to fall asleep without having done my nighttime eye routine, please wake me up to do it.

I'm not just being lazy. This condition zaps the life out of you.

Same as above

Same as above

How painful and depressing it is

Condition can affect mood.

It makes me bad tempered

Again, it doesn't go away once I have it so be mindful of fans in area I will be in. Even if I use drops I still have to stay away from air blowing at me.

It's a valid condition that can affect one's day to day

It's a chronic pain disease.

Are you better now than you were at your lowest point? If so, how would you define better? 

Same

Very much so. Once I was able to understand why I was having dry eye and how to soothe it or prevent it, my life became so much more enjoyable. I didn't have to walk around in pain and stay away from certain activities.

Definitely better now that I figured out a routine to follow to treat my dry eye. It's not gone but it definitely improved.

I made the hard but necessary changes in my life to accommodate dry eye syndrome several years ago, so they are now part of my life, and the things I loved to do are now mostly in the past. I am doing much better than I was when I first realized that though I could improve some aspects of my dry eye problem, it was never going to go away. So yes, I am better now.

much better but I wouldnt take no for an answer with roadblocks

Yes. Less red eyes. More aware of the dryness. Better nighttime control.

Yes, I am better. I spent the last two years on 5 different eye drops every two hours. I had liquid plugs inserted to try and help retain moisture. I was on steroid eye drops so long I developed advanced cataracts. My vision fluctuated to the extreme. I could not drive, I could not read. Eye pain-sharp stabbing eye pain, woke with corneal abrasions on several occasions.. my eyes were so red that I looked like Dracula's daughter. I am now on prescription and OTC eye drops 4/day with occasional every 3 hours depending on dryness. I was able to discontinue my Tryptyr. The pain improved to just occasional instead of daily. My eyes remain slightly red in mornings without the severe redness. I can drive now. Reading remains an issue, but much improved.

Not sure that I am, I'm just so frustrated.

Yes. My lowest point was when I could barely see while driving. It was very unnerving.

I am not better or worse. I just deal with dry eyes as best as I can because I have no choice. If I take good care of them, they feel better. But it is a constant chore. The other eye conditions (floaters, cataracts, vision changes) along with dry eye make dry eye feel more of a burden.

I am better because I have more tears now, so I am less dry.

Yes, I’m better now because I have more effective treatments.

Yes, I am significantly better than at my lowest point. I would define better by the fact that I am not constantly aware of the pain with my dry eyes, or the swelling when there is inflammation. The fact that my vision is not fluctuating due to the dry eye and I can perform all my ADL's without constant pain.

Yes a bit because of drops and treatment

Yes! I tried many types of treatments, including stem cells. If autologous serum didn't work at restoring my corneas, I would have needed corneal transplants in both eyes.

Yes. Eyes are less scratchy with prescription and over the counter drops. It was a relief to stop blood draws of about 12 tubes to make 6 months of plasma eye drops.

Better vision

No, I think I am worse because more diagnoses have been added to my list of eye problems.

yes, my eyes are less red and feel better

Yes, though my condition severity seems to be on a bit of a roller coaster. At my lowest, I had a huge stye that would not resolve, demodex overpopulation, and at least one of my lids would stick to my cornea at night. Right now, I have none of those issues but know they will each likely circle around again with no clear reason why.

No.

Better now means learning strategies and anticipating routines to improve vision

Yes, my lowest point was complete blindness and pain so intense I wanted to die. I have vision, although it is blurry, hazy, and fragmented from scar tissue. I'm able to get around my house and other familiar areas on my own.

I improved from dysfunctional vision to barely functional vision.

Not really better as I'm having trouble with my scalera lens fogging

I am so much better after getting sclerals in 2023. My eyes are not constantly in need of artificial tears and don't hurt all the time.

Yes

no answer.

Better is not finite. Some days better and some not so good.

Better because I know how prevalent it is. Condition wise still very low point

I am optimistic and have hope!

Yes. I can drive again and can get relief from pain

Yes, my eyes almost never get dry, even in situations such as air conditioned rooms that used to be incredibly uncomfortable.

Yes. I was evaluated, got a treatment to unplug my oil glands, got prescription dad drops and understand the whole picture better so I can take care of myself better. Eye sight has improved, but is still compromised.

Yes, I'm much better. My eyes now sometimes ache a few times a day, instead of all the time. I don't need eye drops as often, and sometimes not at all some days. It is now a minor inconvenience instead of a really bad annoyance that greatly worsened my quality of life

Yes, by a lot. It was terrible to get good vision and comfortable lenses for a decade post transplants for kerataconus

yes, I can at least wear my contacts for a few hours

Before I was prescribed xiidra, I didn’t think I could live with the extreme discomfort. It was terrible.

I am slightly better. I've been able to recognize how best to apply drops in my circumstance as well as identify the environmental affects to my eyes.

Not better , worse

yes, able to live more of a normal life (due to time, lots of doctors, and treatments)

yes, better. Now that I have RF/expression, better probiotic and removed foods I was sensitive to I have more tears and less inflammation but all is not perfect, just better

It ebbs and flows with where I am and what I'm doing. Over all I think I'm better, because I'm more comfortable at nighttime due to punctal plugs. Being more comfortable at night makes me better during the day. Better means not waking up solely due to the feeling of my dry eyes, and not being distracted at work because of my dry, burning eyes.

I get far less corneal erosions than I did when first diagnosed.

No

Yes! Sclerals have been life-altering for me. I can get through 14-16 hours of my day with decent vision and almost no pain. I don't think I could have continued on as I was.

No

I now have a daily regiment that I follow which starts as soon as I open my eyes in the morning & ends with drops/gels & heat masks at night. Throughout the day I use drops & heat masks with my lenses out. Following this routine has cut down the number of ‘down days” I can now manage to were my lenses 8-10 hours My life has freedom!!

My eyesight is better now that I've found eye drops that help me see better and don't blur my vision.

Yes. My lowest point was after 3.5 years into menopause and my eyes were so excruciatingly dry & painful I had to keep them completely shut for approximately one whole month. Out of sheer desperation I tried a bit of compounded 0.1% estriol (not estradiol) cream in my eyes and noticed some improvement. This was amplified with 1% compounded testosterone transdermal cream (both applied to upper arms or inner thighs).

I read Rebecca's book saying "You are not alone. There is hope. We will work with you" . And I have learned from others who have been treating this for years. I have gotten many helpful hints and am encouraged to keep trying for solutions or even partial ones.

Yes I am - PROSE lenses are an absolute miracle. They help me see with clarity, provide moisture through the fluid trapped between the lens and my cornea and enable me to blink on top of the lens instead of my scarred cornea. Better is having days be "normal". Unfortunately, the nights are still hard but I manage.

No change since outset

No really

Mildly better after total punctal occlusion, more moisture at times.

better is having been to the eye doctor and getting this diagnosed and being told what to do.

Yes, I know what to do to keep eyes calm through trial and error

No

I have products and a regimen that work for me most of the time.

Yes. More info on ehat to avoid helped a lot.

Experience, many years of handling my condition

I have solutions to help make my eyes feel better. It does not solve the problem.

I feel that I have not hit my lowest point yet.

Yes, previously I was experiencing cornea erosion events 90 - 95% of the time with pain, vision changes, inability to focus, etc..., and that is down to only 5% of the days. I still have the disease and symptoms like light sensitivity, depth perception issues, cornea scarring - but without the pain, everything else is manageable.

Yes. I can spend more of the day with my eyes open than I could at one point.

I am better. Better is that I spend most of every day comfortable.

Yes. I am no longer as hypersensitive to air flow and I've the tools now to better tolerate sunlight.

I’m better in that I’m not in as much pain.

Yes, since scleral lenses. I am not in pain CONSTANTLY, despite ongoing pain and discomfort. I use less artificial tears than before (though still a lot).

No

Better is being able to relieve symtoms for longer periods of time.

No

I am the same

Yes. I still use drops but not as extensively

Yes, much better. Most days I have negligible pain, but once in a while I experience a flare-up, and when that happens, I feel like I am back in the trenches. It's like encountering a dementor -- all my happiness is sucked away and I can't feel joy. Better for me is no or negligible pain (though I always "feel" my eyes these days; I don't think they will ever feel completely normal again). I can't wear contacts anymore, but that is the least of my worries. And I only maintain my "better" by spending $600 every six months on PRP drops, which add a logistical hurdle to travel. My confocals leave a lot to be desired (I have significant nerve loss) so I am far from out of the woods, and because I am still taking an antidepressant which is supposed to work on neuropathic pain, I am afraid that I will experience a much more painful baseline when I am no longer taking it. Another thing I would like to mention that I am not sure what is the best place for in this survey. Addressing neuropathic pain from dry eye requires systemic meds such as duloxetine, gabapentin, or nortriptyline. Some people tolerate these meds with few side effects; I am not so lucky, and the duloxetine I was prescribed on the presumption of my having neuropathic pain (not confirmed at the time! and still not conclusively confirmed now!) has produced its own set of side effects that rivals dry eye in the degree that it has disabled me. It has seriously affected my cognition, and because the brain adapts extremely quickly to duloxetine, I am now trapped in a multi-year, extremely gradual taper that is the only way I can discontinue the medication safely. I am in a whole other set of support groups to manage that problem and the impact this medication will have had on my life because of how it has stunted my cognition in a time when I should be laying the foundation for my career is enormous. Neuropathic pain medications are a godsend to many patients whose pain isn't touched by any other treatment, but in many cases they come with a heavy cost. Dry eye patients are often forced to make the difficult choice between crippling eye pain and systemic side effects from pain meds. Relatedly, I wish there was a better way to diagnose neuropathic pain. It tends to be (or is perhaps exclusively) diagnosed with the proparacaine test, which I feel is unreliable. I often experience residual discomfort (or a feeling that my eyes still don't feel normal) after instillation of the proparacaine but not quite pain, so I struggle to provide a "post" rating for my pain level. Does that mean I have neuropathic pain? Doctors never take the time to discuss the nuances of the test. There should be a better way to diagnose neuropathy, especially when doctors are basing important parts of a patient's treatment plan (e.g. whether or not to prescribe pain meds with serious side effects and possibly an extremely difficult discontinuation profile) on it.

Have you made any important breakthroughs with dry eye? (E.g. with treatments, insurance, diagnoses, triggers)

Yes, I found the specific eye drops that work best for me. I also know the triggers (CPAP, riding ATV's). Previously when riding the ATV, I was using only sunglasses to prevent wind from getting in my eyes and when they started to hurt/spasm, I would insert eye drops. Now I make sure I use gel drops before heading out, and I wear tinted goggles to make sure no wind bothers my eyes. I was just riding this weekend and tested it out with the drops and just using good wrap-around sunglasses, but eventually the wind won and I had to put on my goggles, which was just fine. The pain didn't occur though, which was great, so I was able to prevent that by using gel drops initially before departure.

The only breakthrough if you call it that is my direct like to the FDA about companies that word smith to bypass safety requirements. Insurance doesn't cover treatment. I have the diagnosis. There are a lot of triggers, but as long as I can avoid or prepare for them, for the most part I can manage.

I discovered that using tea tree oil eyelid wipes every night and warm/hot compresses and avenova spray every morning seems to have kept my previously ongoing blepharitis away, now for over a year. And I found that lymphatic massage and gently expressing the glands around my lid edges every day improves irritation and tears somewhat.

yes- Cequa is a lifesaver, sleep with silk eye mask, no air blowing on me while sleeping, Have tried many natural products like manuka honey, emu oil, caster oil taping eye at night, supplements, Facebook dry eye groups have helped a lot with suggestions but can be depressing to focus on everyone with painful issues.

Nighttime taping.

I believe the Hylo Optase Ointment at bedtime treated and improved my redness, and reduced my tendency for corneal abrasions.

insurance is paying now, and I am now not having to go to the doctor as much. But it was a long haul.

No real breakthrough. Antibiotics and prednisone and various prescription drops have done some good, but I’m not sure I could pass a driving test.

I have seen significant improvements in the past when I was underdoing acupuncture for fertility. My Vision improved and my eyes felt good. I have not been able to try acupuncture again (yet), but it's on my list. The provider I used is no longer available unfortunately. I have also seen improvements in tear production when I was drinking matcha tea (using the powder) daily. I ran out and haven't tried this again, but I am going to see if I can recreate the results again soon. One other thing - I found that when my eyes felt irritated, it was not always because of the dry eyes. I am sensitive to chemical sunscreens so if I use a product on my face that contains them, my eyes start to sting. It took me a while to realize it was not my dry eyes that was causing the uncomfortable feeling.

I had a lower blepharoplasty and this helped the structure of the eye by elevating the lower lid to provide better closure and a decrease in tear evaporation time.

The things that have helped the most are autologous serum drops and Vevye prescription drops.

Yes, with the continued maintenance, procedures (ILP, Meiobian gland probing, LLT treatments) and medications (Cequa, Meibo) my dry eye is significantly better. I'm not able to use Cequa which helped however my insurance has denied it and I'm using Vevye which is adequate but not the same as the Cequa.

Not really

Yes, discovering that autologous serum drops could restore my corneas.

Several weeks of Xdemvy has made my eyes feel less scratchy for longer periods of time.

Lenses

Still going through the appeal process with UHC for IPL. It has been close to a year in a half since I had this treatment and a final decision on whether or not UHC will cover this is still being reviewed. The administrative law judge ruled in my favor and then UHC appealed.

I was able to participate in one of the clinical studies for xDemvy and was lucky to qualify for affordable prescriptions for it later when I had recurrent demodex overpopulation symptoms.

I got dark glasses.

no

Doctors don't know nearly enough about these conditions. Even the best corneal experts, even the best rated specialists.

Treatments: scleral lens and avoiding light sensitivity triggers such as lightning, LED lights, welding torches, and reflected sunlight.

No

Only the sclerals

No

Am afraid that every different doctor has a different approach _ And it is my eye sight that they are playing around with. I am not an experiment to be played with or to get extra money from Medicare and my insurances.

Yes. Stay away from all those companies trying to sell their products. I'm on a Facebook Dry Eye forum and learn more from this group of people than the doctors combined.

I was diagnosed with spasms and the Botox is part of my treatment that has helped

Just received my Sceral lenses and life is so much better

I should have asked for scleral lenses years ago. I was told they are expensive and might not help. They aren't cheap, but worth every penny.

Treatments - I tried Restasis, Xiidra, Cequa, and Tryvaya before settling on Tryptyr and Miebo that have actually helped. Insurance - I enrolled in an EyeMed vision plan that covered medically necessary contacts in full, so my scleral lenses and the fitting ended up being completely covered by the plan with no out of pocket cost, which would have been $1300. If you're willing to do some research, you may be able to get an individual plan that covers medically necessary in full (BlueViewVision in Ohio for me), or via your employer's plan.

Not really. I am just using what is available and paying out of pocket for it

Moisture chamber goggles when sleeping at night greatly improved my daytime symptoms. Since I sleep with my eyes open, (nocturnal lagophthalmos), my eyes were really painful when I woke up and the dryness persisted all throughout the day. With the goggles, now I wake up with well lubricated eyes and they only dry out near bedtime. I use moisturize chamber glasses at night to prevent my tears from evaporating, which fixes all my problems all throughout the day and night

no

Tryptyr has helped me but once the 1st year is up I am afraid of the monthly cost, insurance prob wont cover it. mine no longer covers Xiiadra

Not really.

I think I've been able to finally determine which drops work best with my eyes.

Went to dr hamrah for 2nd opinion . He confirmed dr Galor diagnosis of CN . Both prescribe serum tears and steroid . Dr Galor knows me better but needed for an exam and confocal . My goal is to work with both to improve . Working with Nuerologist’s to get Botox injections for migraine to help with CN

Going to a pain management doctor is key. - Tryptyr, miebo, atologous drops, xiidra, cymbalta, lyrica, tramadol, ice packs on my eyes, warm compresses, steroid eyedrops

breakthrougs? Only thing I can say is I try to think of everything - what did I eat, what meds am I on that might make my eyes worse, if I have allergies, how do I best handle those,

Punctal plugs have helped moderately, more than probably anything else. However, the Olopatadine really helps with the itchiness. Cyclosporine I don't think does much, but I use it to prevent the disease from getting worse.

Eye drops have become more effective over time and I have found one that works well most of the time.

no

See above on sclerals. I have learned to be very mindful of things that worsen my condition (e.g. wind/AC/bright light/swimming). I also take my prescribed treatment regimen very seriously. My doctors have given me protocols that really help , so I take it as my job to listen to directions and to faithfully follow them.

Not really - just endure

Yes, Medicare coverage of 1 pair of lenses The use of preservative FREE products has eliminated some of the bad reactions I had in the past. Meetings on Zoom with DEF support groups for information & available new products & treatments.

No. My eyes are dry all the time unless I use eye drops.

Yes, see above. Also, I avoid anticholinergic food products and medicines like sugar, caffeine, alcohol, tobacco, dairy, pasta, gluten, white rice, salt, strong condiments, citrus fruits, vitamin A & D (as supplements) and also progesterone (as it's diuretic properties dry out my eyes to the point where I start to see floaters). Furthermore, anti-inflammatory or anti-oxidant supplements aggravate my condition.

The breakthrough is knowing that DEF has other people to give me ideas and guide me. Doctors do not have the time. I feel that I have concierge service fromDEF personnel. That is a major breakthrough for me

Prose Lenses, serum tears

I AM GOING FOR MY SECOND TIXEL TREATMENT TOMORROW AND MY THIRD ONE IN TWO WEEKS (requires three treatments total) and I have tried IPL and Lipiflow with no improvement so I am hoping Tixel works AND NEED INSURANCE to realize this should be covered!

Punctal cautery That is it.

no on insurance for sure!! triggers are when I don't compress but I compress less by using restaysis. I don't have to do it twice/day or even once/day, I do it every 2-3 weeks now.

Treatment, taking Dr recommended brand omega 3 has made big difference

No

No.

No.

Only to be diligent about hydrating and using eye drops regularly

no

No

Yes, the order and type of eye drops that I take, how I manage lifestyle triggers, and when I take action to intervene has dropped my pain.

Hypochlorous acid for cleaning my eyes has made a big difference. Autologous eyedrops and my heated eye mask made a big difference too.

My first breakthrough was switching to preservative-free lubricant eye drops. That made it so that eye drops didn't actually make me worse. Scleral lenses were my most major, huge breakthrough. I got them for vision, but I love them for dry eye. It's why I define better like I do.

Properly fitting sclerals have helped considerably.

No

scleral lenses

No

No.

No

no

Prescription drops and amber glasses have helped.

PRP drops made the biggest difference in my condition. AST seem to be the most widely used biologic drop but I wish it was easier to get a hold of PRP because the difference for me between the two was night and day. I used AST for about a month with no improvement. Within a few days of using PRP, my pain greatly reduced, my light sensitivity improved, and my night vision improved. It felt miraculous and I will keep using PRP for as long as I need to.


What's the most helpful thing an eye doctor has ever told you?  

Information about mybomiem (sp) glands and how to keep them active.

Just the diagnosis and treatments

Advice about expressing the glands around my lids daily has proven useful.

new solutions are coming

My oil glands were healthy and my primary problem was my lagophthalmos.

To keep a daily diary of dry eye symptoms and treatments and bring them to my appointments.

Just really explaining what's going on.

Keep trying different meds, drops, compresses, etc.

1) Convinced me to try eye plugs which felt great immediately 2) Told me about eye compresses which help a lot 3) Told me about eye lids scrubs using Qtips and mineral oil, 4) Gave me a one page dry eye handout with several things to try (I still refer to this sheet). This gave me hope that there are things I can do to make my eyes feel better!

Not to give up but to keep working on my problem.

?

Because I have allergies to some of the night ointments, she told me to place a thin layer of vaseline on my eyes to help with my dry eyes at night. It made a difference and hasn't made a change in any detrimental way.

Nothing as such

That I could request medical accommodations for work.

Use a Bruder mask at least once a day. Not all masks are the same. Bruder mask is more effective than some others to provide moist heat to eyes. Use eyelid wipes.

Practice

I can't think of anything.

alternate therapies

I cannot think of one specific thing but was immensely appreciative of my eye doc's interest in diagnosing and treating my conditions.

There is no cure for this?

scleral lens has improved my problem wearing bandage contact lenses

That the original cause of my condition was related to my eczema, which I was complete shocked by.

I do not know what is wrong with your eyes but lets try PROSE lenses since you are here.

My dry eye has worsened because my blink rate is less because of Parkinson’s.

If a symptom appears in both eyes at the same time, it is probably not an eye issue (more than likely something in the brain).

When I was ready to give up on my vision in the left eye - I was told not to give up.

No much.

I can't think of one thing. Isn't that pathetic? Doctors in the world we live in today just want to make money and scoot you out the door.

Yeats ago I was told I had dry eye if I had been told to what degree I could of addressed it morr

My Retina Specialist referred me to a Cornea Specialist, she in turn prescribed Restasious (sp). It was better but then she plugged my tear ducts and switched me to Xiidra. I then went to her recommended Opthamologist and he fitted me for the Scerals.

Nothing

I guess about the condition of my oil glands I understand I have to take more care with compresses and periodic treatments.

Using eye gel was the best advice I got. It helped me greatly for daytime use while I figured out on my own the best tools to use for nighttime

get sclerals!

not sure

That I can use the preservative free single use eye drops more than once in 24 hours.

The most important thing was being diagnosed with DED. Prior to my diagnosis I had no idea what was going on. That and the two primary types of dry eye.

Nothing . Ophlamogist’s are not high on my list

Not sure

let's just keep trying There are so many reasons for dry eyes and as long as my doc is willing to work with me, I had hope

They didn't "tell" me, but they set me up through secure messaging with an array of moisturizing eye drops, which all feel different to me, and I use on different occasions depending on how my eyes feel (are they gritty, burning, itchy, dry?). They recommended both punctal plugs and scleral lenses. I'm still working on the sclerals, but the punctal plugs were definitely worth it.

Can’t think of anything. After four follow up visits it didn’t seem he could help me and I never pursued the issue with another Dr.

continue with the drops.

The first time my Hopkin's specialist saw my abysmal Schirmer's test values and said: "Oh dear, you must be in so much pain. I can help you with this."

Not much

You can’t over use the lubricants.

Wear sunglasses and a visor or ball cap.

They haven't. All solutions mentioned above I've discovered on my own accord or by researching medical literature.

That he wishes I would feel better. He has, to be fair, tried many things. And I see it is trial and error. But to tell someone you might feel better in the future doesn't help with discomfort in the present.

Prescribing the PROSE lenses - I just can't say enough about how my life changed in 2009 when I got the right lens and 2012 when I got the left lens. Then in 2018, offering me the serum tears.

Nothing. He just reminds me I have thyroid eye disease. Live with it.

Warming masks, cleaning the eyelids, taking Omegas

Nothing After 3 years of treatment and spending a ton of money there is really no significant improvement.

all of the above. And that things happening otherwise to my eye is aging.

Follow the protocols he gave me before he would prescribe medication

They reached out to other eye doctors and discussed by issues to try to come up with some potential solutions.

That I'm doing all I can to manage my condition?

They haven't. They just confirm the diagnosis and continue on.

Drink lots of water

nothing

The condition will not get better.

Naming/diagnosing my disease so I could do my own reading and become my own experiment to figure out what works for me.

Use hypochlorous acid to clean my eyes. I've seen at least 7 different eye doctors about dry eye and that one tip came from just one doctor.

Not to use preservatives in eye drops. Actually, eye doctors don't have much to say about dry eye most of the time, which I wish would change.

Honestly? Being properly diagnosed. Being diagnosed with nerve damage helped me understand my condition better and helped me understand that I wasn't crazy.

How to administer eye drops.

Recommended scleral lenses

Nothing

Be patient with treatment.

Nothing

your crazy!

That I have chronic dry eye and Ortho k was a better option than soft contacts but r glasses

Explaining that inflammation was my problem!!

Is there anything you've learned that you would go back and tell your past self? 

Yes, I am a former contact lens wearer and I would want to ensure that I took better care of my hard contacts and my eyes--not to neglect them or to sleep in contacts. I think I have astigmatism from dried up hard contacts and from napping in them.

Hire a patient advocate for every single doctor visit bc the medical gaslighting in the US is insane!

Advice to my past self: 1. Do NOT clean my eyes with baby shampoo even though that's what all my doctors said to do; 2. Believe the instruction from doctors & labels warning not to use steroid drops long term even though they work and if you stop using them the problem returns...because it will stop working and leave you worse off than when you started using them.

research research research

Be very cautious getting ptosis surgery.

Take Dry Eye seriously. Use your eye drops and heated masks. Protect your eyes. Do not take the IPL treatments and Lipoflow. They did not help.

Not really sure about this one.

No, I’ve seen an opthomologist for myopia, astigmatism ,light sensitivity since 8 years old. I stopped wearing contacts due to dry eyes.

Yes, take dry eyes seriously and care for them properly. Be careful also about what you put on your face near your eyes.

Not to try contact lenses to preserve moisture. For me, they did not function well as moisture chambers.

?

Keep on at medical professionals to really listen

no

Continue to follow the research on dry eye and be willing to try new treatments.

Read

Yes, definitely I would tell myself to always get a second opinion before proceeding with any procedure. Don't trust even the best doctors because they don't all know everything. Talk to others, become as knowledgeable as you can on your own, and no matter how hard things get keep advocating for yourself.

No.

No easy fix; just keep trying options and perfecting technique

That my untreated eczema, the inflammation, would one day cause me to nearly go blind and to not ignore it or get so used to the condition that I didn't bother to treat it.

1. Buy extra dry eye equipment whenever I find equipment that works for me because companies stop making equipment. 2. Use saline that matches the eyes PH to fill scleral lens with.

cauterizing both tear ducts might not have been a good idea. One doctor said they discovered that the tears kept in the eye may not have been good; like dirty dishwater being kept in your eye.

Don’t get LASIK

Keep putting eye drops in. Change doctors.

Yes. Get a second or third opinion before any eye surgery!

Yes - be more tender with my eyes. Years of office work and I never rested them properly

I should have not kept going to an Opthamologist that did nothing, out of loyalty.

Get the scleral lenses!

Get treatment sooner…insist on treatment.

I would not get Lasik if I knew my eyes would be this dry. I could have avoided all these dry eye problems and costs

wish I had gotten surgery way sooner

yes, don't wear your contacts too long each day and start using drops and warm compresses

I don’t know if there was anything I could have done differently

The importance of taking care of my eyes, similar advice that I was given for taking care of my teeth, at an early age.

Learn all you can about dry eye , cornea nueralgia , Mbg , best docs , find dry eye foundation Get on fb pages . I really did not understand all of this . Also now chat gpt has helped me get organized and put thoughts and questions for Doctor visits . I wasted alot of time

It will get better, maybe not perfect but you will be okay. we are in the height of research for this condition and more treatment options are coming out each year that bring hope.

Don't use lash serum (caused the Trichiasis) and as soon as I even had an inkling my eyes were dry I should have found a GOOD dry eye doc

Don't wait so long to tell your eye doctor about your dry eyes!

Avoid screens while away from work and keep eyes hydrated throughout the work day.

no

Don't wait on being pushy.

Cannot think of anything

For years I allowed the pain to be part of my life, I should have spent more time understanding what I could do on a daily basis to prevent it being so debilitating. Educating the patient is so important.

How can this be prevented?

Yes - low dose compounded estriol & testosterone can rehydrate the eyes!

That there are people who have this ailment and understand its ramifications and the trial and error part. And that there is definitely help from DEF in a significant way.

Maybe don't do PRK or PTK for the scarring - I don't think that was a good decision on my part. I think it made my eye future worse, not better.

KEEP MY EYELIDS CLEANED DAILY

No

all of the above.

I can't say I would, because at the time the solutions being offered were the most recent/cutting edge.

More eyedrops throughout the day. I used to only use them once or twice a day.to contact DEF

Do not expect others to find solutions

You will learn to manage the disease.

Keep going to you find a doctor that listens. Track your symptoms, interventions and lifestyle indicators to figure out what works for you. I started this tracking about four months after I should have and it took 4.5 months to figure out an effective treatment protocol. I assumed that what my doctor said was the best treatment possible and it wasn't. Everyone is different and you have to find what works for you.

You are not alone. Be persistent and don't give up on finding improvement.

Speak up for yourself. You don't have to live uncomfortable. There are treatments other than OTC eye drops available for dry eye, and you should press to use them.

Don't trust the first doctor, or the second, or the third. Get multiple opinions and advocate for yourself. In the meantime, wear moisture chamber glasses AS SOON AS POSSIBLE.

No

No

To use lubricants more frequently.

No

compresses, drops, specific glasses and sunglasses with a rubber insert that helps keep out blowing air

It's a process and patience is needed

Don't do IPL. I did several rounds of IPL in the early days of my dry eye because I was desperate to get better and it seemed like no harm could come to me from trying it. After all, even doctors at Penn offer it. Well, I ended up with dark circles around my eyes that I feel have dramatically changed my appearance and made me very self-conscious about my looks. I have no clue how, or if, this problem can be reversed.


What's the best piece of advice you would give to another patient who is struggling? 

Hang in there, it will get better. Use the warming eye pad to help release mybomiem glands, use gel drops and eye drops that prevent evaporation every day, several times a day. If they can head the pain off at the pass, it won't spasm and get out of hand. Once you have that under control, everything will fall into place. It will get better!

Find what works for you.

Advice to others: Don't believe everything "experts" tell you to do; Learn how to do good research, talk (Facebook discussions or in person) to others with dry eye. Be resilient.

find a dry eye specialist, if that dr does not help go to the next one until one helps

Keep trying new things. Talk to other patients.

Keep a diary of symptoms, treatments, and response. Take it to all appointments. Seek expert treatment if possible, even if that means traveling. Use your eye drops and heated mask as prescribed. This is NOT just dry eye. Your eye health is very important. Protect it.

It will get a little better, when you don't have to go to the doctor so much, but you must do your drops as the doctor tells you, or you will notice it. and not for the better.

Keep trying, don’t give up.

Keep your eye lids and eye area clean, and use drops that feel good. If your eyes sting after using the drops, they are the wrong ones for me.

Find an ophthalmologist who has a positive attitude and is willing to work with you. Someone who does not give up on your case.

There are lots of things to try that can help — drops, medications, ointments, nighttime goggles, punctal plugs, moisture chamber glasses.

Keep up with the maintenance and keep fighting. It's a lifelong commitment but hopefully you will also get to the point of comfort and not chronic pain.

Don't give up

Limit your time on screens, and toss out cosmetics and soaps which contain ingredients that kill corneal tissue.

Try to find an eye doctor who specializes in dry eye, or at least has a strong interest in it. Not all doctors care about it or keep up with the research.

Research on pubmed and join dry eye foundation

Reach out to others that are dealing with the same issues that you are.

keep trying therapies for better results

Try and get more sleep.

you will benefit from your adversity as you gain confidence in your technique

If you are having issues with healing, and are being told to take ibuprofen for the pain, it may be the cause of the delay.

Learn to communicate with your eye doctor. Eye doctors are trained to make patients see 20-20 so patients need to learn to express eye discomfort, eye pain, light sensitivity, and irritated eyes.

Connect with the Dry Eye Shop and get on their mailing list. Rebecca is an excellent source of information. I trust her.

See if sclerals will work for you. See if you can find a Dry Eye Specialty Clinic.

Don’t give up!

none

Hang in there. We are all in the same boat. Maybe some day more answers and better treatments will be coming.

A good doctor is so important and don’t dismiss it as just dry eye

There is hope and there is help. There are new options being developed all the time.

Try sclerals

Find a good doctor who will see you regularly and is up to date with treatment. My doctor has been amazing, she took my complaints seriously and was willing to work with me and see me as often as possible to deal with this. When trying different Rx eyedrops, we had 2-3 month follow-ups, so the entire process didn't take too long to find Tryptyr, and as soon as it was available, she wrote me a script for it and was always on the cutting edge of treatments. My mom was originally seeing another doctor who had her on Restasis for a few years with no help, but would only have an appointment annually.

Get treatment. Treatment will provide some relief even if the condition is not curable.

Try out all kinds of dry eye tools, drops, ointments and gels (under the supervision of a professional). Some combination of them will work and improve your QoL. Just make sure you and your ophthalmologist are well informed on all available products.

keep at it!

hang in there and try a different drop if the one you are using doesn't help

Try everything

Stay as positive as possible, meditate . See friends . Dont talk about it as much

Love yourself, be patient, and forgiving to yourself. Have hope there will be a treatment one day that will help. Know other people are struggling too and you are not alone.

pay attention to your whole body health. Do allergy testing, review drugs you are on, talk to a nutritionist, etc

Tell your eye doctor immediately, so that you can address it successfully and to prevent it from getting worse!

As heard on a dry eye YouTube or in a newsletter; keep up, don’t catch up.

Learn from reliable vetted sources all you can about your disease so that you can be your own best advocate. Join peer groups where you can lean on and learn from other patients.

Just take it a day at a time

Make this a mission. Understanding what is causing the problem & then research what you need to do to solve it. Don’t accept pain!

See an ocular neurologist who may refer you to another specialist for treatment.

The same!

Obviously to contact DEF and get a notevook to write down all the suggestions from materials and zooms.

Find a doctor who listens to you - really listens. Be careful about what drops/solutions you use.

Visit the Dry Eye Foundation, read the blogs about how others are coping and keep trying everything until something give you at least a little relief

Find the best corneal opthamologist.

to let them know there is help, with the Foundation for support and also selecting a doctor who knows dry eye and work regularly with them.

Use best practices such as cleaning eyes, hot compresses, high quality omega3, eye drops, olive oil

Don't be afraid to ask questions and seek other perspectives.

You will find products and a routine that works for you. Try everything.

Read up.on the condition. Try everything and hope one something will work for you. After that, just accept it and move on.

Contact DEF for support, resources and advice.

keep trying products until you find something that helps

I am not the person to ask for advice. I had not sympathy early in my experience with the disease. I have yet to get over that.

No one is coming to save you so you have to be an active advocate for yourself.

The above--you are not alone, keep trying.

Get connected with the Dry Eye Foundation. Go to some support groups. Sign up for the Facebook page. Read the Dry Eye patient booklet. Get involved so that you're not alone and you can start to get knowledge to help you manage this condition.

Practice whatever re-centers you. Re-centering techniques like meditation, walking, etc looks different for everyone. Figure out what that is for you and practice it every chance you have. The nervous system is a mysterious thing and I believe that should be a priority in assisting with dry eye health.

Seek a doctor that truly understands and listens to you.

They’re not alone

Find cause of condition to get better treatment options.

No advice

same as above

Same. It's a process. There is no miracle cure but a lot of trial and error.

Don't give up. Medicine is rapidly advancing. Problems that seem intractable today may soon become a thing of the past. And please please get yourself to another doctor/try whichever treatment you haven't tried yet. You don't what what could be your breakthrough. As my experience has shown, there is even a huge difference between AST or PRP; I'm so glad I didn't stop at AST but kept seeking out other doctors and kept trying new things.

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Meet Lisa Myers, Member at Large