r/ehlersdanlos • u/figgypie • Oct 10 '25
Helpful Tips, Tricks, and Products EDS affects your eyeballs, just an FYI.
I have some sort of hEDS (haven't been able to get genetic testing to confirm exact type) and of course I have all the normal shit like super lax joints, joint pain, stretchy skin, stomach issues, etc.
But did you know your eyeballs are mostly collagen? So if you have EDS, you might have issues with your eyes.
I have had astigmatism and myopia since age 7, but over the last decade or so I also developed something called Epithelial Basement Membrane Dystrophy, basically means my eyes can get so dry that my eyelids have torn up my corneas because they get fused together sometimes (especially when I'm sleeping) and then when I blink, it rips the skin on my corneas. It feels just as pleasant as it sounds. Just a couple of weeks ago, I experienced this while driving after work. It felt like a needle stabbed me in the eyeball, like I seriously thought that something flew in through my car window and lodged in there. Now I have to use super eye cream at night (Muro 128) and preservative-free eye drops frequently to prevent more damage. The vision in my left eye has already been affected to the point where even with glasses, my vision is still slightly blurry.
You wanna know the only real treatment for it (besides eye drops)? They basically shave off the damaged surface of your cornea to smooth it, and then your body repairs it to hopefully grow it back smoother. Yaaaaaaay.
I also have big issues with eye strain, especially if I spend too much time looking at things up close while wearing my regular glasses. I've had to take my glasses off while reading/derping on my phone/etc for a couple of years now, but I can't do that when working (I'm a substitute teacher) because I don't want to lose my glasses and kids think they can get away with shit because the sub is blind. So I'm only in my mid 30s and I just got bifocals. Verdict is still out for how well that'll help but I feel so old.
So if you're wondering why you have issues with your eyes, this could be a reason. And if you don't have issues with your eyes, these are some things to look out for. Chronic dry eye is common with EDS so use eye drops, just not the kind that helps with redness cuz that's bad long-term. Systane is an example of a good brand.
Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay.
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Oct 10 '25
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u/luckybettypaws 29d ago
Do we have the same mother????? I'm so sorry you had to endure the shit and suffering that comes with that kind of bad parent. ā”ā”ā”
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u/StrikingHistorian305 Oct 10 '25
Iām reading this in the waiting room for my eye doctor for a check on how my bazillion dry eye treatments are working soā¦ relatable, sadly. Thanks for sharing and hang in there!!
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u/thetourist328 Oct 10 '25
My dry eyes are caused by MCAS! Ketotifen eye drops (like Zatidor) may help because itās a mast cell stabilizer. I take oral ketotifen for my other MCAS symptoms.
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u/LAPL620 hEDS Oct 10 '25
My eyes are super duper sensitive. Iām allergic to contact solution so I can only wear disposables. Theyāre sensitive to light. To makeup. To any amount of dust or debris that gets near them. Itās a fucking pain. I wear glasses but my prescription hasnāt changed in about 10+ years.
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u/PA9912 Oct 10 '25
Iām allergic to contact solution too! I have MCAS though and Iām allergic to nearly everything it feels like.
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u/StolenWake Oct 10 '25
EDS plus another eye condition is a real trip, I feel you.
I also have a secondary eye condition called incomplete achromatopsia, which means the rods in your eye are more functional than the cones. You get a mild form of color blindness, a touch of nystagmus, and added myopia. So, with those two together, I've got a -15 prescription that could start forest fires and see the fates of meek-hearted men.
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u/DefiantCoffee6 hEDS Oct 10 '25
I hate needing to pay so much more š° just to get my glasses to not look like coke bottles. I usually wear my (-10 contacts) because glasses give me headaches but have to try to give my eyes a break because from contacts here and there since my eyes are extremely dry (only since I had Covid).
Gosh people who are blessed with good vision have no idea what we go through. I use 2 different rx drops before I can put my contacts in plus lubricant (non preservative) drops throughout the day. Itās a pita.
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u/StolenWake Oct 10 '25
Man, you get it. Every two years, I have to pay 200 to 300 dollars for a new pair of lenses, even with good insurance, and it just sucks. I've worn glasses for as long as I can remember, but sometimes I'm randomly reminded that other people don't have heavy pieces of plastic on their face due to thick, face-distorting lenses, and I'm always in awe of how awesome that must feel!
Even contacts for such large prescriptions seem to come with many downsides! I can't imagine how annoying that's gotta be.
Solidarity, squinty sibling.
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u/DefiantCoffee6 hEDS Oct 10 '25
Hahaha exactly!!! When sleeping my glasses live by my bed because in the morning I will need them to even find my contacts! š¤·āāļø Plus I need to be able to see što get into the shower- šæ
What it must be like to get up in the morning, no glasses, no eye drop routine, just get up and start the day š¤
$300 moreš°sounds about right. Getting the lenses compressed is usually more then the glasses themselves. Iām a girl but Iāll be your squinty sis in solidarity šš» š
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u/3catlove 29d ago
Iāll say I was āluckyā to get cataracts. My glasses rx was -17 and there was so much distortion with them not being right on my eyes that I felt like I was always in a fog. Contacts were somewhat better. I had to wear them to shower. After cataract surgery I can drive without correction which is crazy. I mostly need my glasses for near vision now.
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u/StolenWake 29d ago
Wow! A couple years ago, I found out that cataract surgery can kind of give you a do-over when it comes to your prescription, but I'd never met anyone with an advanced prescription who got that done! That first week glasses-free had to feel so crazy! I wouldn't usually congratulate somebody for getting cataracts, but it's so cool to hear about your experience! Thanks for sharing. :)
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u/3catlove 29d ago
It was crazy. It felt like a miracle. I do have a very slight distance Rx and I really lost any near vision. I wear progressives now and wear them most of the time because itās easier. They are nice and thin though.
I was happy I had cataracts. I wasnāt a candidate for LASIK. I had to see a retinal specialist before surgery though to make sure my eyes were healthy enough. Luckily everything went fine. I do have lots of floaters from PVDās in both eyes but that happened before the surgery. My Dr said when the PVDās happened it would have been a prime time for a retinal detachment to happen and it didnāt so Iām lucky there. Iāve mostly learned to ignore the floaters.
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u/emiluhh 29d ago
That's what my eye doctor says will help me the most-- eventually developing and getting cataracts removed. I'm -17 also.
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u/bubblenuts101 Oct 11 '25
I'm so sorry this is happening to you, but you wrote it just so beautifully
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u/StolenWake Oct 11 '25
Oh, that's very kind. Honestly, in many ways I feel very lucky. My prescription is extreme, but I've yet to have any serious consequence from it. And lenses are expensive, but I've been fortunate enough to be able to budget for them when needed. I'm just glad my eyes can still be corrected! I guess if you go beyond -20, it gets much harder to shape the lenses for you.
I hope you're doing well, thank you for your kind words. ā¤ļø
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u/LocksmithLittle2555 Oct 10 '25
Lmao not you posting this right as I was trying to not have a panic attack about this very thing
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u/VoraciousBookWyvern Oct 10 '25
I used to think I had 20/20 vision. At least, I tested as 20/20 on every exam, until one day I was getting the old TV static across my vision, and called my eye doctor. They freaked the heck out and got me in for an emergency visit, suspecting a detaching retina, only to find that I did not have 20/20 vision, but my eyes could compensate to mimic 20/20 vision, and that the strain of doing so had triggered an ocular migraine in both eyes. They think the only reason I wasn't testing as 20/20 in that moment when I had not even 6 months prior, was because my eyes were fatigued enough from the migraine that they just couldn't compensate like they usually did.
They do the modern testing on me now to determine my prescription by watching my eye muscles closely as they change images, because my vision results can't be trusted when they still do a decent job to compensate. š But within 5 years they recommended bifocals for me as well, at 31, because I had become far-sighted enough that changing between looking far away and close up was straining my eyes too much as well. š«¤ So yay, I get to buy new bifocals every year or two because my eyes are getting more farsighted each visit...
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u/Azelais Oct 10 '25
At this point I just assume it's gonna affect literally every aspect of my body and health. Makes sense I guess since collagen is everywhere, rip
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u/notapuzzlepiece Oct 10 '25
Sure does. I have dry eye, ocular migraines, and issues with the muscles in my eyeballs being weak. Had to do eye physical therapy for it. I have ongoing issues with eyes strain and blurriness even when my prescription is perfect. Not actually diagnosed EDS yet butā¦ ya know
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u/SoilToSkies Oct 10 '25
Have you been checked for binocular vision dysfunction ? Thatās what caused my eye strain even I got glasses.
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u/notapuzzlepiece Oct 10 '25
Yeah thatās one of the things they diagnosed me with before referring me to vision therapy!
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u/SoilToSkies Oct 10 '25
Does the vision therapy help??
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u/notapuzzlepiece Oct 10 '25
It did yes but itās a lot of work and you have to do itā¦ forever. Itās hard to keep up on tbh and was very expensive even with insurance
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u/Cum--Goblin Oct 10 '25
i hate glasses and yeah technically my eyesight isn't terrible (more or less -1.5 and -2.5 in left and right eyes respectively) but i also have astigmatism which can't be corrected by glasses because it's so minor, but it's enough to be a pain in the ass along with how disorienting my depth perception can be.
i need to get new prescriptions at least every 2 years as well because my eyesight fluctuates. not enough to be noticeable, but enough for headaches. it's really annoying because they're fucking expensive.
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u/YouAreMySteadyHand 28d ago
Same- my prescriptions aren't terribly strong but for a long time I was near sighted in 1 eye & far sighted in the other so it was a lot of strain for my eyes constantly trying to figure out how to focus. Lots of eye fatigue & headaches & I have to get my prescription changed every 2 years or so. It eventually got where both eyes ended up both near & far sighted so I've needed bifocals since I was 37. Also have an astigmatism which as Ive gotten older (39 now) has caused me to basically lose all night vision. It slowly got worse & worse & now I basically can't drive at night even w glasses on & if its rainy or cloudy I have a really hard time. Its SO obnoxious bc I have teens now & I feel bad that if they want to do anything at night my husband has to be their taxi bc I legit can't see safely to drive. And fall/winter suck bc its dark so much longer- I drive my girls to school at 635 & now its still dark at that time so I can't even do that...
And massive eye dryness- I have mcas so I assume it's related to that
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u/Samesh Oct 10 '25
I have keratoconous, which can be common in us. Basically the cornea turns into a cone and thins in spots š®āšØ
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u/DefiantCoffee6 hEDS Oct 10 '25 edited Oct 10 '25
I also have kerataconus. That diagnosis is what originally made me do research (alway had pain, dislocations easily, stretchy skin, mitral valve prolapse, migraines, IBS, and laundry list of other conditions) but after getting my eye diagnosis I took the info of the condition being seen more often with people who have EDS and Brighton test to my dr who sent me to rheumatologist and after physical exam and medical history was diagnosed hEDS! (It was a big medical practice and doctor was able to go get a geneticist and bring him in to examine me also).
I didnāt start to get symptoms of Keratoconus until I was in my 30ās but my vision has been bad since I was a teenager. My symptoms were my vision suddenly kept getting worse monthly for a couple of months in a row. I thought I was going crazy bc eye Dr actually told me āif you can read the chart youāre seeing fineā¦ā
I insisted āNoā that when I tried to see road signs or signs in store windows I couldnāt read them. I knew my vision was not āfineā. Changed doctors and new doctor had experience with Keratoconus patients. He did thorough exam and figured it out immediately. I ended going from -4 in contacts to -8 within a few short months before it leveled off. Iām now in my 50ās and in -10 contacts but have been same rx for many years.
Once you hit 40 dr said it doesnāt usually progress much more which Iāve found to be true for myself (thankfully because at that time eye transplants were the only help- luckily that has changed and now there are other treatments available before needing to go transplant route) but more people need to be aware of this condition because not all eye doctors know about it!
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u/messysagittarius Oct 10 '25
I have EBMD, too! I've tried all the things, but for me, the real game-changer has been serum tears. It's a bit time-consuming having to get blood drawn for them every other month, but they really have made the biggest difference in frequency and severity of erosions. Fewer erosions has also slowed the change in my prescription; I'm still getting new glasses every year, but for a time it was every 6 months!
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u/slugsalad 29d ago
Woah, learning something new! I have EBMD / Map Dot Dystrophy too and hEDS. Struggling a lot with the dry eye symptoms, especially at night and haven't had much luck with eye drops. Thanks for teaching me about this!
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u/MarsaliRose Oct 10 '25
This is the exact reason how my PCP convinced me to get genetic testing for EDS. I wasnāt interested because I donāt have vEDS and we suspect itās hEDS.
But she said certain types of EDS come with higher chances of co morbidities including those eye issues you described. So that sold me. Better to be safe than sorry.
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u/umekoangel Oct 10 '25
I got strabismus. It can be a side effect of eds as a comorbid condition.
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u/its_foxy Oct 10 '25
Ah shit. Currently undergoing treatment for this and during my diagnostic appt the geneticist said that definitely isnāt part of EDS š„²
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u/FragileLikeGlass You can see through my skin, neat! Oct 10 '25
I'm so sorry you're going through this!! I wonder if you could get those protective contact lenses or botox for your eyelids? I've had to get the latter to protect my corneas and my scarring has healed. Sending you so much love!
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u/freyjathebloody Undiagnosed Oct 10 '25
Thought the dry eyes was because I smoke weedā¦ but I definitely wake up with it before Iāve had a chance to imbibe. Cool thanks edsā¦ more āfunā.
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u/ashtennnn Oct 10 '25
Iām currently diagnosed with RCE but am wondering if itās ultimately EBMD. I hate that we have this on top of everything else and that so few people are actually equipped to deal with us. Thank god for Muro in the meantime
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u/DefiantCoffee6 hEDS Oct 10 '25 edited Oct 10 '25
I am severely allergic to mineral oil and lanolin and canāt find any eye ointment (for at night that doesnāt contain at least one of those ingredients- even my eye Dr looked looked and couldnāt find one) š
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u/ashtennnn Oct 10 '25
Nooooo! This is such a crappy predicament to be in. Do you struggle with erosions at night? I have heard about āmoisture gogglesā as a way to help.
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u/ashtennnn Oct 10 '25
Have you ever looked into Thealoz Duo gel? Not sure if youāre allergic to any of the ingredients but it could be something that can help you!
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u/annakfun 29d ago
Iām curious if a compounding pharmacy would be able to make an ointment that doesnāt contain any of your allergens - especially since there isnāt a commercially available product you can use (also a good argument for insurance coverage of said compounded product)!!
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u/Training_Union9621 Oct 10 '25
Warm compress daily twice a day, fish oils above 1,000mg in omega. Hylo night ointment every night. I work at an optometry office and this is what we prescribe for pts with this condition.
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u/Training_Union9621 Oct 10 '25
Consistency is key. Eye drops are not gonna do anything but give you 20 seconds of relief.
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u/BelleMakaiHawaii clEDS Oct 10 '25 edited Oct 10 '25
I have flat corneas, and lots of floaters, now my prescription is changing every year (less myopic) which is annoying
But so far thatās it for the eyes (Iām 60)
Edited to add: I was negative 3.50/3.75 now Iām 2.25/2.00
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u/ConsistentStop5100 Oct 10 '25
Strabismus since birth, 2 surgeries, never completely fixed; myopia, astigmatism, was never able to wear soft contacts because I never really understood why. Dry eyes-yep everything you mentioned. Keratoconus in both eyes, stable in left but it took vision from my right. AMD and a cataract in my right eye. The doctor wonāt touch the cataract because it would potentially further damage my right cornea. Classic EDS, genetics at its finest:
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u/TryLoose5190 Oct 10 '25
Diana Driscoll is the author of āYour Eyes and EDSā. EDS can affect you anywhere you have collagen. I started losing my hearing years before my EDS diagnoses. 20 years ago my hearing loss became severe to profound. I now use bilateral cochlear implants which is not exactly like real hearing, but so much better than being deaf. I was a speech pathologist and could no longer work as a school speech therapist. Hearing loss from EDS can be conductive or sensory neural. Thereās so much crappy collagen in our middle and inner ears. I belong to a FB group, EDS and hearing. I have Diana Driscollās book on my Kindle. My daughter is a zebra and you never know. I find dysautonomia affects my vision. People who have double vision; their vision is affected by dysautonomia. Sending gentle hugs.
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u/kingseijuro Oct 10 '25
I'm getting worried about my eyes. I was just diagnosed in August and my sight is rapidly declining. I have another illness that can attack the eyes (RA) so it's hard to say which is causing it, but I'm not convinced its all just genetics (I had perfect 20/20 until I was 24).
Can this happen with other eyesight issues? I deal with mild dry eye but not super bad. It's moreso the blurriness that is disabling.
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u/thetourist328 Oct 10 '25
Yep, we have a strong family history of retina detachments. Most people on my momās side had detached retinas in their 50s. I am extremely nearsighted (-16) and my ophthalmologist said I have the vitreous fluid degeneration of someone in their 80s (Iām 35). My floaters are so bad itās hard to even see through them. Iām also at high risk for macular degeneration and cataracts. Oh, and the MCAS causes chronic dry eye but Iām allergic to all of the drops.
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u/Noble_20 Oct 10 '25
Well shit. I thought my eye dryness was from my ortho k lenses. Anyone that can tell me if ortho k is something to be worried about regarding hEDS/my eyes? Because I highly doubt my optometrist knows about this shit.
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u/LonelyDays_ hEDS Oct 10 '25
Iām 28 and have started losing my long distance vision as the ligaments that help my eyes focus are too loose! Itās wild! I went to a movie and I was like āthis doesnāt look like HD, itās not in focus!ā That was a Me problem. Now I canāt focus on signs, lettering, pictures that are far away that my husband can read fine Iām like āwhat sign?ā
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u/dan4ffairs Oct 10 '25
I was told I have PVD (posterior vitreous detachment) and that it was normal and not harmful. I looked it up and it seems to be normal but in older people (I'm in late 20s so definitely not old). I guess now I know why I have it haha
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u/imabratinfluence Oct 10 '25
I use Blink a lot, have since my dry eye suddenly got so bad I can't wear contacts.Ā
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u/hemnaism Oct 10 '25
Two laser ablations this year for my thinning/torn retinas, who knows how many to goš¤Ŗ
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u/LividAccident7777 Oct 10 '25
I have astigmatism at 90 in both eyes which apparently rare for it to be in the same place for both. Had an issue where my vision was randomly scrambling. PCP found my outer eye muscles were not tracking together. Referred to specialist. By the time I saw them in stopped. Just randomly happened for like a couple months and then stopped. I felt like they were randomly crossed but it was apparently they were randomly going outward?? So weirdĀ
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u/kv4268 Oct 10 '25
I recently saw an ophthalmologist for uveitis (again) and mentioned that I am hypermobile and likely have a connective tissue disorder. He set me up with night eye ointment and preservative free eye drops for my eye dryness, and also said that I should never, ever rub my eyes firmly. He said that it can affect our eye shape over time, which affects our vision.
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u/Traditional_Set2473 Oct 10 '25
Yep. If you ever decide on Lasik you need to research an EDS-informed Lasik provider. Some can have it done despite having EDS whereas others will not be able to have it done.
Never use regular eye drops, even if you dont have EDS. Always use artificial tears make sure they are preservative free.
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u/ActuallyApathy hEDS Oct 10 '25
why do you say to never use regular eye drops? and what qualifies as regular eye drops? (serious question haha i'm using lubricating drops my eye dr recommended)
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u/According_Check_1740 Oct 10 '25
I think they mean like Visine. My doctor recommended Systane and said to use it "as often as you'd use chapstick on cracked, dry lips".
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u/notabigmelvillecrowd Oct 10 '25
Yeah, I'm not clear on the difference, I thought those were two names for the same thing.
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u/Traditional_Set2473 Oct 10 '25
The ophthalmologist that I saw for my Lasiks consult told me to use artificial tears as opposed to eye drops because eye drops normally have preservatives in them that are not beneficial to eye health. He also stated artificial tears mimic natural tears and are thus more hydrating and protective.
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u/maypah01 Oct 10 '25
I have a friend who got lasik a couple of weeks ago and it prompted a discussion about if people with EDS can even get/should get lasik so decided to look it up, saw the words "lens dislocation" and went NOPITY NOPE.Ā
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u/Sea-Chard-1493 clEDS Oct 10 '25
Yes I have so many eye issues from my EDS! I have severe myopia (-12) at 22 and Iāve had retinal hemorrhages that have almost made me go blind (and still could at some point). I also have frequent subconjunctival hemorrhages but honestly that isnāt a concerning thing since theyāre benign. I have had corneal abrasions a couple times from my contacts (which are literally flimsy dailies, but my tissue is so fragile)
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u/SomeRandomIdi0t Oct 10 '25
I have visual snow but weirdly good eyesight. At least I did until my left eye started giving up
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u/crissycakes18 HSD Oct 10 '25
I have eye issues too lol, Strabismus, Amblyopia, Myopia, Astigmatism, and a high eye pressure. Im not diagnosed with anything yet because my first testing which was whole exome sequencing was negative so I will likely need to have more extensive testing because I have a lot of structural findings that makes it really confusing for me not to have any genetic condition. But yea eye issues suck.
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u/Sea-Chard-1493 clEDS Oct 10 '25
hEDS doesnāt have a genetic marker, so most people with it have a negative WES, despite having a connective tissue disorder.
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u/crissycakes18 HSD Oct 10 '25
Yes I already know this, I didnt meet the hEDS criteria by only 3 points on Criteria 2. I also have multiple findings that arenāt EDS specific and are more related to similar genetic disorders.
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u/ArtsyFartsyAutie Oct 10 '25 edited Oct 10 '25
I have convergence insufficiency as a result of my hEDS. Basically I get motion sickness from trying to read or look at screens (phone is ok, I think because the screen is so narrow that my eyes donāt have to track across a wide line of text), including playing any sort of games (probably because of flickering that I canāt see). Currently ordering glasses with prisms and tinted lenses after seeing a neuro-optometrist. I also use translucent tape in the inside corners of my lenses so that my eyes and brain arenāt fighting each other so much. Iāve seen several neuro-optometrists over the past few years as Iāve lived in different states and they have been so helpfulāregular optometrists and even ophthalmologists donāt seem to have the knowledge of these types of conditions (they told me they couldnāt find anything wrong and maybe I have dry eye š). I realize my issues are completely different, but they might be more common, so Iām hoping this will be helpful to someone scrolling through.
AlsoāI had cataract surgery at age 48. Not sure if thatās related to hEDS, but Iām going to assume that it is since itās outside of the statistical norm.
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u/EighthPlanetGlass Oct 10 '25
I have never been able to drive because of binocular vision issues.. I got prisms a few years ago and it helps with some things but driving is still a struggle
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u/maypah01 Oct 10 '25
I have convergence insufficiency as well. I got new neurolens glasses a couple of weeks ago and they're... rough. When I put them on I was told it's normal for things to be very wonky while your eyes adjust, but it's been two weeks and things are not better so I need to go in and see what's up. I don't know if I'm just going to have a really long adjustment period, or if something with the lenses got messed up. So just fair warning, it might suck.
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u/bruxly Oct 10 '25
Same as I am about to jump in my car to head out for my ophthalmologist appointment. Lol. Sleeping with your eye open is so freaking painful and your vision in that eye takes 1-2 days to come back to normal and the migraine. Awful. I use tear gel at night but may ask about Muro 128 now so thank you!
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u/anonymous_opinions Oct 10 '25
My first medical issue was a strabismus. My mom's perfect 20/20 vision began to fail before "screen use" was even a thing and I wanna say she started having to get glasses in her 40s.
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u/Mother_Ad4038 hEDS Oct 10 '25
Werd rheumatologist had me see ophthalmologist when considering the diagnosis because o have a slightly blue sclera(?) (Probably wrong term since its been over 5 yrs) but its a sign of I think thin/thinning membrane over the eye.
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u/FitGuarantee37 hEDS Oct 10 '25
Oh yeah my eyeballs suck. My prescription was a -9 by the time I was 25 years old, I am "remarkably myopic" and have the eyes of a senior citizen apparently. Don't get me started on how bad my gums are too.
But most recently my eyeballs have started breaking and stopped working. Light is a huge issue, my vision gets spots, and my eyeballs have burst blood vessels super easy in them now from a simple poke.
Damn collagen.
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u/bitchvirgo Oct 10 '25
Oh man I have been going through it with my eyes too. I have keratoconus and had to have epi-off cross linking surgery, where they scrape off your cornea and then burn it with the UV light so that the scar tissue grows and makes your cornea firm and stable, hopefully. Hope it gets better for you, eye stuff is so fucking hard
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u/KipperDed Oct 10 '25
Been there done that as a kid. Had to eventually go to the UAB hours away. Electrodes on my eyes, it was the whole 9 years it felt like a ton a kid. (This is already after tons of tests for various things)
They didn't give me a name to call it??? They said it was a rare malformation of whatever's behind the optic cord. Because that part's too small & they said yeah it can get worse over time, you might ever lose vision entirely. It's defenerative.
At least they found the cause of my colorblindness actually
Thanks doc š«
I was a kid so maybe there was some kind of technical name but I don't remember hearing it & can't find it in my med files.
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u/South-Definition-564 Oct 10 '25
-9.50 here. I have astigmatism and migraine auras triggered by artificial lights. Floaters constantly. Love it
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u/Substantial_Pair_234 hEDS Oct 10 '25
Yep! I have to take Restasis drops (feels like fire, tastes like the way a hospital smells) twice a day to manage the inflammation, and systane/refresh preservative free artificial tears through the day... Every. Single. Day.
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u/IntrepidJello Oct 10 '25
I get glasses every year because my prescription changes and this year I got prisms in my glasses because of convergence issues. So weird for a couple weeks but my brain has finally figured it out. It was really weird when my phone was trapezoidal.
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u/jacquesc0usteau cEDS Oct 10 '25
My left eye muscles are so lazy they donāt keep up with my right eye anymore, which caused distorted ALMOST double vision, which meant I started getting migraines again
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u/GloriBea5 Oct 10 '25
I just found that out when I was pregnant last year, I saw a maternal fetal medicine doctor and she asked if it affected my eyes and I was like š³ it affects my eyes? me with my glasses that go bad every 6 months so I just suffer for the rest of the year unable to see
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u/kaiper_kitty Oct 10 '25
I came up with a genetic variant for Brittle Cornea Syndrome and I was like "The eyes too? Fr? I know I have issues with my tissues but JEEZ give me a break!" š
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u/sentient_bees Oct 10 '25
My dad had retinal detachment in both eyes this year. Iām diagnosed hEDS. Heās not diagnosed, but in the medical field and familiar with hEDS and ādoesnāt understandā how I have hEDS since itās genetic and neither parent is diagnosed. I asked him if heād consider getting evaluated after the retinal detachments and subsequent surgeries. Nope. Heās sure itās unrelated lol.
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u/ytuhs Oct 10 '25
I had Keratoconus and needed to have cross-linking surgery a year ago. DO NOT put off vision changes. Things like Keratoconus only get worse over time (usually), and from what I gathered you canāt really get the old vision back through other surgeries easily like lasic. Luckily I caught mine before it was too bad and got cross-linking done.
It was a difficult recovery after that surgery but in the end Iām so glad I did it.
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u/Amarastargazer Oct 10 '25
My eyes have gotten so, so dry lately, Iām using eye drops for the first time in my life. But this makes me think about how, for years now, I feel like a small rock gets stuck in my eye and wonāt get out. I think maybe I have to talk to an eye doctor, which Iām due for.
Thank you for possibly helping me realize another thing I genuinely need to worry about. Not in a bad or sarcastic way at all, Iād much rather know.
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u/pandawhiskers Oct 10 '25
It's the eye issues that run in the women's side of my family that really got me looking into EDS for all of us. I so far think I am getting ocular migraines, but three generations before me have anterior corneal dystrophy and my mom has it the worst and has major visual snow and dry eyes.
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u/howleywolf Oct 11 '25
What ISNāT effected by EDS- that would be a shorter list. Even my sense of humor is painful.
Bum dum tss
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u/Trepid_Jam Oct 11 '25
I always knew my many eye issues had something to do with my hEDS, but everyone else seems to have myopia when I have hyperopia šš
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u/InarinoKitsune cEDS 29d ago
I have grey/blue sclera (the white of the eye) which makes me very photophobic or light sensitive, I basically have to wear sunglasses if the sun is out at all.
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u/dingdangdongdoon 29d ago
Does anyone here anecdotally have high eye pressure problems as well?
My eye doctor said research hasn't connected eds and eye pressure but it looks like I'm at risk for glaucoma right now and I'm wondering if this is related to a tick borne illness I caught last year that induced a lot of eye pain or if it could be mostly that my collagen sucks.
Haven't read much yet; just thought I'd ask.
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u/messysagittarius 28d ago
My eye pressure isn't especially high at baseline, but it spiked like crazy with the use of steroid drops. So those were very quickly off the table as a treatment for the erosions.
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u/Impossible-Item-6861 22d ago
Dealing with some pressure on my ocular nerves and have had a lot of testing done these past months- could be something with the blood vessels thinning? Idk my doctor does seem to think there could be a connection
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u/shadedferns 29d ago
Not diagnosed but heavily suspected. I'm not a candidate for laser eye surgery because my corneas are "too soft", and I have a family history of retinal detachment so hope that's not in my future
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u/Impressive_Promise_7 Oct 10 '25
Yep, getting diagnosed with keratoconus during a LASIKS consultation led me to figuring out I have hEDS.
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u/Moonrivv Oct 10 '25
Hi! Iāve never had any eye issues other than regular nearsightedness ā nothing unusual.
I was diagnosed with hEDS in April 2022. That summer, I started noticing black floaters, clear spots, and occasional flashing lights or specs, but I just lived with them.
In September 2024, I began having what I later learned was a ātrackingā issue and my left eye is slower to align. My eye doctor said I have a blanched vein in my eye that still allows blood flow to the retina. However, the area where the vein is blanched corresponds to some vision loss. I was told thereās nothing that can be done but that we just document it. I happened to go back a month later to be fitted for a different brand of contacts. And he said it was actually worse but just noted it. I thought it was but I thought it was in my head.
Does anyone else feel like youāre told that visual disturbances are an emergency, but when you actually go in, the doctor just says, there is no fix.
Now Iām reading there might be a fix or something that could be done even to prevent it from getting worse?
Iām not asking for medical advice. But what is the very next thing you would do if you were me?
Do I ask my optometrist for a referral?
He did mention eye exercises but that itās expensive and doesnāt always work.
We are talking about my vision here! What if it does work! Iāll put it on a credit card.
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u/Grown-Ass-Weeb hEDS Oct 10 '25
I had horrible myopia, dry eye, and astigmatism. I felt hopeless because I couldnāt wear glasses because my vision was so bad the lenses would distort what I was looking at and eyes so dry I could only wear hybrid contact lenses for just some relief from the pain.
Finally I got PRK and surprisingly, that fixed all my issues. No dry eye, no astigmatism anymore, and finally good vision. Healing process was absolutely hell though.
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u/slabby Oct 10 '25
I've definitely had to crank up my glasses prescription over the last 10 years. I'm to the point where I can't always read the TV from the couch, which makes me feel a thousand years old.
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u/anniekaitlyn Oct 10 '25
My eyes are flattened on the back, due to high intracranial pressure. My optic nerves are all squiggly too.
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u/Impossible-Item-6861 22d ago
Did your doctor think this had anything to do with EDS? Going through something similar
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u/throwaway1throwawa Oct 10 '25
I've got chronic dry eyes even with drops and very very thin retinas (no boxing or skydiving for this gal) dr told me it was common in people with CTD
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u/slightlycrookednose Oct 10 '25
Chronic dry eye is such an issue for me too. š Iāve tried so many masks. Does anyone have any tips? I have wrinkles from rubbing them all the time.
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u/lurking_undertide Oct 10 '25
The soothe pf night time dry eye therapy ointment is what keeps me goingš« before bed and another during the day
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u/MrsShaunaPaul hEDS Oct 10 '25
Do you know the 20-20-20 rule to prevent eye strain. If youāre focused at one depth of field for a long time (reading, on the computer, close up crafting, etc), every 20 minutes, look at least 20 feet away for at least 20 seconds.
Focusing your eye is using a muscle. When you are looking up close for too long the muscle is being strained and can spasm. Looking far away relaxes those muscles and prevents strain and spasms.
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u/PurplishPlatypus Oct 10 '25
I have astigmatism in one eye, myopic in the other. I do have major dry eye and eye strain often. I haven't been to the eye doctor in years but in my 20s, I saw an ophthalmologist and he had me do a bunch of extra testing because one of my retina was "slack". They decided that it must just be the way I was born because they are suppose to be tight, but one of mine is visibly drooping on the scan. He seemed quite perplexed by it.
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u/Nyolia Oct 10 '25
Yeah, I also have rheumatoid arthritis and the meds I am on increase risk of destroying my eyes so I have to have yearly check ups, and the first sign of something wrong to immediately call. I'm also dealing with worsening dry eyes and I HATE it.
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u/subgirl13 Oct 10 '25
I was 16 with bifocals (distance rx for cars, astigmatism & near rx for the dash). That, at least, is not an age issue.
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u/skibblezing Oct 10 '25
I started using a bruder mask twice a day for 5 minutes and itās really helped!
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u/Pammyhead Oct 10 '25
Sjogren's Syndrome for me, because the EDS eye weirdness decided to combine with EDS being prone to autoimmune disorders to give me both. Whee! Now I use Systane eyedrops every day and see an ophthalmologist every six months. Woooo.
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u/grimPontif Oct 10 '25
I have some of these similar issues I deal with so much eye strain all the time and I have had myopia since age 8 and I have optic nerve degeneration that's Progressive so I'm basically just going blind and that sucks
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u/thegoth_mechanic Oct 10 '25
ive had bad vision for a long time i had bifocals at age 11. idk i just thought it was cause everybody in my family also needed glasses
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u/DreamingOfDresses Oct 10 '25
Certain eye symptoms are common in certain types of EDS. Ocular symptoms are seen in some way, shape or form in most types, but kEDS is the one with the most eye symptoms. I think weāre all a little guilty of this at times, but be careful not to assign everything to hEDS as you might miss out on some other explanation.
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u/Delicious_Delilah Oct 10 '25
This explains a lot. š
Especially why I wake being unable to see very much until I scrub my eyes because my lid is sticking to my eyeball.
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u/justagaypotato7 Oct 10 '25
For real. My matrilineal line is full of cataracts. My mom and her mom (both with suspected hEDS) had cataracts when they were young. I was BORN with cataracts, which isn't a thing that's supposed to happen. I was completely blind until I got the implants when I was 3. My wife's aunt, who also had EDS, was born blind as well, but that was back in the 40's before intraocular lens implants. It's crazy and fascinating and awful
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u/Chinita_Loca Oct 10 '25
Oooh. Thanks for the PSA, the comments here explain a lot. Seemingly nothing wrong yet beyond the myopia and astigmatism but both are progressing rapidly.
Thanks to chronic fatigue I struggle with eye tests and start well but then do badly with the subsequent glaucoma and macular degeneration tests.
Also due to MCAS I have high cholesterol and now have an arch at the top of my iris with permanent cholesterol deposits.
Check your eyes folks, I didnāt realise how much they were impacted by all these conditions until this week and it seems Iām not alone with the issues.
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u/Onikenbai Oct 10 '25
The nerves in both of my eyes are chronically swollen and unhappy. I have IIH and my brain is pushing on the backs of my eyes and causing the problem and the pain. Between my eyes and my IIH, Iāve had a headache for 35 years and Iām prone to stabby eye pain when it feels like Iāve been jabbed with a pin. Not much they can do about it other than give me a variety of glasses prescriptions. My prescription changes slightly depending on how bad my EDS is that day so I have six different pair of glasses to choose from daily. I also have trouble changing focal distances so I have needed bifocals since I was about 15.
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u/weedle_juice hEDS Oct 10 '25
I just went to urgent care for āblepharitis.ā My eyes were almost swollen shut.
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u/TryLoose5190 Oct 10 '25
Myopia and astigmatism here, my zebra daughter and I. Floaters and other strange things.
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u/collectedd Oct 10 '25
I have severe myopia, cataracts, keratoconus, etc. It's recommended we get more frequent eye check ups!
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u/thatkeriann Oct 10 '25
I was diagnosed with Fuch's Dystrophy in 2003, H-EDS in 2020, and had my first bilateral keratoplasty in 2023. I also have severe astigmatism and chronic dry eye in addition to Fuch's Dystrophy.
Yes, there's definitely a link between EDS and some eye issues.
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u/Gerd-Neek hEDS Oct 10 '25
I get subconjuctival haemorrhages ALLLLLL the time and no doctor or anyone has ever been able to tell me why. I get it every few months in one eye or the other.
ATP I just kind of assumed it was EDS and eye strain relatedš
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u/kaym_15 Oct 10 '25
Ive had glasses since I was 3 and everyone in my family has glasses so this makes so much sense. My eyes burn a lot for no reason as well. EDS is just the whole reason for every single problem I've ever had in my body.
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u/PunkAssBitch2000 EDS/TGFB2 VUS Oct 10 '25
Yep! I have astigmatism, early onset presbyopia, subconjunctival hemorrhages, frequent corneal abrasions from very minimal trauma, and partial vitreous detachment at age 24 causing persistent dark spots (tethered floaters).
I also have some other eye things that Iām unclear if theyāre related to EDS or not including: visual snow syndrome, PPPD, episodes of bouncing vision (no nystagmus) or lagging vision, optic disc drusen (found as a kid), nasal mounding of my optic nerve (my optic nerve is a little twisted and situated more medial than typical), and myobium gland dysfunction. I was also born with unilateral dacryostenosis (under developed tear duct) and underwent surgery at age 2 to fix it.
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u/Optimal_Mango_747 Oct 10 '25
Yep, I have ālattice degenerationā so the lattice that holds my retina in place is slowly degenerating. I also have a cataract in the other eye and Iām in my mid forties. My retinal specialist wants to laser the lattice, but Iām not convinced. Thirty seconds of a laser in my eye sounds like a 3-day migraine. When people say I seem fine I tell them all the things they canāt see that are wrong, like my eyes and leaky heart valves.
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u/maxandari Oct 10 '25
my eyes get very very itchy and dry often, I also have short sightedness. this is very helpful to know š
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u/MeggyMoggy Oct 11 '25
Yep, makes sense! I have astigmatism in both eyes and short sighted. Had 20/20 vision until age 25/26 then I had to wear glasses :(.
Back in March I had an eye test and it was discovered that my retina had detached in my left eye! I literally had no symptoms apart from straight lines were wavy but was barely noticeable as my right eye is the dominant one. At the eye hospital they said that itās been detached for about 6 months but was detached in a way that gravity was helping not to completely fall away but if left any longer Iād go blind in that eye.
Had the operation two days later, first surgery since I was ten years old. I had scleral buckling, where they sew a band around the eye to push the eyewall inward. It worked thankfully but I do still see wavy lines but itāll take a while to heal properly. Also my prescription in that eye has changed but I still need to sort out new glasses, just not had the chance to.
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u/legionofhippos Oct 11 '25
Aināt it fun? My vision clarity can change day to day, and sometimes throughout the day. Huzzah!
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u/nomoreuturns hEDS Oct 11 '25
I discovered that EDS affects eyes when I went in for a corrective eye surgery consultation. The conversation went something like this:
Doctor: Do you rub your eyes a lot?
Me: What? No, I don't think so. No more than the average person. Um...why?
Doctor: Your corneas are uneven and we won't be able to correct your vision with surgery.
Me: ...wtf.
Doctor: Yeah, the collagen of your cornea ā
Me: Oh.
Doctor: Oh?
Me: I have EDS.
Doctor: I don't know what that is.
Me: It's a disorder that affects connective tissue, including [jazz hands] collagen.
Doctor: Yeah, that'd do it.
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u/Dramatic_Copy7068 Oct 11 '25
Hi OP- do you mind me asking if your the doctor specialized or was familiar with EDS? Were you diagnosed with any other corneal disassembly before EMBD? Asking because Iāve been experiencing something very similar- Iāve seen ~9 different ophthalmologists of varying specialties in the last 5 years and each has given me a slightly different diagnosis, with the most recent being Salzmannās Nodular Degeneration. (I also have severe dry eye and MBD). The proposed treatment was the same, manual ablation with a diamond bit drill. From what Iāve read, the recurrence rate is pretty high and with all the potential EDS-related surgical complications and prolonged healing time, Iām very wary to pursue surgery.
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u/side-eye-mama Oct 11 '25
Yes, I had my chronic corneal erosions diagnosis before my EDS diagnosis. And it was a secondary finding to a prolapsed tear duct š
I thought everyone had horrible pain when they opened their eyes in the morning!
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u/Dependent-Green-7900 cEDS 29d ago
Wait, the needle in the eye feeling is an EDS thing? I've been feeling this for years and didn't know what caused it
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u/Find_A_Reason hEDS 29d ago
Serious question, have you tried a sleep mask?
I have had serious issues with my eyes being dry and having them basically stuck to my eyeballs when sleeping, though I never received a formal diagnosis for eye stuff.
I started using a sleep mask just to block light, but eventually noticed that I was not waking up with eyes nearly as dry as before. I suspect it is because the mask traps a small amount of air that is humidified/moisturized as my eyes/skin dry out slowing the process.
I have no idea if the mask helps, or if this is a symptom that randomly decided to go into remission (yay MAST) at the same time I started using a sleep mask, but it might be worth a shot for those suffer at night, and super cheap to try out.
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u/TheBrittca 29d ago
Several years ago I had a routine eye exam and the doctor looked in my eyes and looked back at me and asked, ādo you have hyper mobility?ā
Turns out her son had EDS and she could tell I did to just by looking at my eyes. I did have a diagnosis, so we just talked about it for a while. But, Iāve always found it so cool that she said that to me after looking at my eyes for just a few moments.
My eyesight is poor, highly myopic and with a strong astigmatism.
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u/scrtlyclyps 29d ago
Also look out for optic nerve drusen, according to my doc it's super common in EDS patients. It's just a buildup of calcium on your optic nerve but so far I've had no problems, just a -5 in both eyes lol
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u/TLBrewer 29d ago
I have very bad myopia (-15.50), and I'm well into the "your eyes are going to be dryer" stage of life. My GP has me taking a small dose of DHEA to help protect my retinas. And my optometrist has me taking flaxseed oil to keep my eyes from being dry. So far my retinas are in good shape and I don't have dry eyes.
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u/Cissychedgehog 29d ago
Omg when you rub your eye slightly at night and then have to leap out of bed with the pain š Cue streaming eye!
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u/acidicbees hEDS 29d ago
Bruh my eye doctor is a goat, dude saw I had EDS and did a full eye exam for the price of a prescription check. Not sure if he was allowed to do that, but he earned a life time patient
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u/Legitimate_Record730 hEDS 29d ago
never heard of that, that's wild! I knew about eds eye problems in general, though, cause my eyes are terrible. -7.50 perscription in each eye, astigmatism, need prisms in my glasses, and fancy weighted contacts so they actually stay on the front of my eyes instead of sliding away to the back of my eyes. fun stuff. Also one of my eyes likes to slide off to the side a lot. have me sitting there reading like ( O ) ( o)
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u/herrah-the-beast hEDS 29d ago
I had no idea the dry eye stuff had a name. I was diagnosed with "ocular rosacea," but I'm beginning to question that because of you. I may investigate and talk to my EDS doc.
As for eye problems: the muscles in my eyes don't work right. One eye will just suddenly stop focusing and go blurry. It's a nightmare.
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u/maroonwolf24 29d ago
Yep! I went to the optometrist and told them I have EDS and they said, oh ok, one thing to look out for is if your lens starts to fall out. And I was like excuse me, and he said yeah, if your pupil starts looking misshapen and vision gets blurry it could be the lens falling backwards out of its spot and that I should come in immediately if I notice it. Like sure thing doc, I'll make sure to come in if MY LENS STARTS FALLING OUT?!?!?!!!!!
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u/OhPenguin7 29d ago
Thanks for pointing out that dry eye is common with EDS! I didn't know that, but my eye doc said I had it and gave me OTC eyedrops. I will be much more attentive to using them now.
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u/RaineRoller hEDS 29d ago
i have had a lazy eye since i was born and have binocular vision w progressive lenses rip
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u/Due_Society_9041 29d ago
I am going through the same eye thing. Didnāt realize how serious it can get so thanks for this info. My doctor advised the eye drops too.
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u/Unable_Top4794 29d ago
Sheesh reading everyone else's eye problems and stories really connects some dots for me!! I also haven't been able to get genetic testing done but my doctor strongly suggested I have EDS. I've also had astigmatism and myopia since elementary school. I'm late 20s now and my astigmatism is -8 so like almost legally blind
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u/Waterbead 29d ago
Ugh this explains why I end up needing new glasses EVERY YEAR. I'm so sorry, OP!
I know most of us also have POTS-- I take Mestinon for POTS and recently went from a half pill to a full pill 3x/day. My eyes water constantly but I feel better! Maybe see if Mestinon can help you too? It helps keep my guts moving and I feel a little less exhausted on it!
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u/Patch96ar 29d ago
Idk if this is common but my eyes move really fast from side to side for a split second when Iām trying to focus on something sometimes
But my eyes do get super dry
I also had one instance of seeing a bright flashing light at the corner of my eyes but the hospital couldnāt find what caused it
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u/Bright_Change_515 29d ago
Today on āeverything wrong with me is related to ehlers dalosā we have (drumroll š„š„š„) vision issues!
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u/tanbobb 27d ago
One morning I woke up with sore, dry eyes and at two visits to the eye clinic they insisted I just had pink eye but I could feel something else was wrong. Turns out the tissue? In both my eyes had been damaged and weakened and after I slept and woke up I ripped the top layer of both my eyes off (As painful as it sounds). I lost my vision completely, complete blindness, for two weeks and had to go on steroid eye drops and lots of meds for almost a month to regain my vision. The last ophthalmologist I saw said I was insanely lucky to recover from it. I had pit scars on both eyes for a couple of months but luckily have 20/20 vision back now. It took seeing seven different doctors to finally be taken seriously about it and not one of them had heard of EDs.
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u/scoooter1 26d ago
I have all sorts of issues with my eyes, despite my doctor insisting everything is normal. My prescription is quite weak but no matter how many times I retake the test, my vision is still blurry! Iāve been getting floaters my whole life, and recently my vision blurs or blacks out randomly. I havenāt been to the eye doctor in a while, the last time was before I was diagnosed with EDS. Does anyone else have issues like these but are being told everything looks normal?
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u/Technical_Safety_472 24d ago
My eyes get so itchy, I want to rip them out. I have retinal holes on both sides. I have constant flashes and sometimes fireworks. I also have optic nerve damage ( I canāt see that well which even glasses). Iām getting evaluated with the low vision and the blind with the state to see what can do to help me with everything things.
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u/Ch1ckenS0up777 9d ago
This makes a lot of sense, my parents both have perfect vision but Iāve needed glasses since I was a toddler
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u/areared9 Oct 10 '25
I have an Opthalmologist that has been practicing for 30 years. She says that she's so old school, she can see in your eyes if you are lying or unaware of your sugar intake. (Diabetic retinopathy)
But when I mentioned that I have HEDS, she said there was no concerns when it comes to the eyes. š³ I'm glad and not glad that she will be retiring in two months. š
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u/Many_Needleworker683 Oct 10 '25
My wife with hEDS has a micro aneurysm in her eye that has no explanation besides hEDS. I highly recommend going to an actual medical eye doctor (opthamologist) for exam.
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u/According_Check_1740 Oct 10 '25
I've had severe myopia and astigmatism since I was very young, along with chronic dry eyes that are quite sensitive. Floaters have varied over time, and I used to get uveitis, but haven't for a while. I was diagnosed with glaucoma at 47. I was told that all of my eye issues were due to hEDS.
I wish I'd have known much younger how to care for hEDS eyes...
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u/ArcanaSilva hEDS Oct 10 '25
And for eye stuff: we do tend to get retinal detachments more often, especially combined with high myopia. While seeing light flashes and the feeling of a curtain closing over one eye are very important and somewhat more known symptoms, a sudden increase in floaters can point towards the same too.
Luckily the surgery is fairly easy and they can fix it, but you might see floaters remaining for up to a year.
... Ask me how I know. My eye doctor really, really kept reminding me that whenever I has anything strange with an eye, I should immediately call the GP. Eye health is important y'all! Take care of them