Recently, my eyes became very dry and irritated. Because it was more or less time to go to the eye doctor for a new prescription anyhow (read: I’d been ordering my contacts online with an old script for far too long) I decided to make an appointment.
Because EDS is a connective tissue disorder, it effects all body systems. The eyes are especially susceptible to difficulty because they are 80% collagen (the substance affected by EDS). Some of the eye problems that EDS can cause include: Eyelid laxity, lens subluxation, thin cornea, photophobia (light sensitivity), dry eye, high myopia (nearsightedness), posterior staphyloma/blue sclera, angioid streaks, retinal detachment, cataracts, glaucoma, and macular degeneration. Because of these risks, people with EDS should have a detailed eye exam each year.
Personally, I am lucky to only have experienced a small number of these things! I do have myopia, photophobia, and dry eye. I also have some abnormalities in the vasculature of my eyes. My ophthalmologist recommended that I update my glasses (it’s been years since I got a pair) and wear them more often in order to give my delicate eyes a break from my contacts. She also prescribed contacts that are specifically for people with dry eye.
I was not pleased about the idea of wearing glasses more often at first, because I started wearing contacts when I was 10 or 11 years old and am very accustomed to having them in most of them time. Eventually though, I decided to use it as an opportunity to pick out a fun new set of frames, a pair that I thought I’d be tempted to wear more often. I am happy to announce that this approach has been quite successful for me!
I will be sure to make my yearly appointment a priority now that I know the risks EDS poses for my eyes.
Source:
Disclaimer: I am not a doctor. I am simply describing my experience. If you have any concerns about your health, please consult with your physician.
I'm Sara,
bibliophile,
professional napper,
and disability advocate extraordinaire (kind of) aspiring to find happiness with chronic illness and pain. 
Before I knew I had EDS, I tried to wear contacts. My cornea was constantly getting torn, no matter how careful I was. I still have scars on my eyes and a lot of these symptoms. Especially dry eye.
Yikes! I have resigned myself to saving the contacts for more special occasions etc…but if I have that much trouble I will quit them!
This is long. 1st is just becaise I dnt hear many EDS stories of young cases of detached retinas. 2nd is a surgery I required due to wearing soft contact lenses so I had to only wear glasses after. And maybe something to watch out for. In have Classic EDS with lots of Hypermobile traits/crossover with the problems but meet Classic criteria thus that is my diagnosis.
Detached retina was a teen: I had a detached retina at age 15 nearly completely, and didn’t have surgery for many months, but thankfully the surgery mostly worked. I was basically blimd, but it ismt nearly as scary as mkst think, just keep getting hcekc uos amd if it is time for surgeyrnget it done. And look to see if you notice tears. I thought it didn’t matter that I could only see gray with no shadows becaise it didn’t hurt– it was only fixable ( though still it is worse in my vision supposedly) becaise it detached from under my eye. I am not afraid at all of it happening again becaise I know what to look for a d get check ups for it, a d will get the surgery again if needed. If it isn’t a great outcome it doesn’t really scare me either, as lomg as I am not blind. My left eye is a mess though, a d the cornea nearly as thin as it can spread (the eye that detached). I recognize I am lucky, though it took a while for my sight to return, and I would prefer to not get holes, and especially a detachment in y “good eye” in the future, but having been through it I just accept it as part of EDS and be aware. And make sure the best choice in treat,and is done if anything happens again. I see it as just another dysfunctional body part and I really would be afraid to be truly blind, but I just see it all as an inconvenience, the event, consequences, and potential for repeats. Actually going through it made me a lot less afraid of it all, to be honest, and just more practical. Eye surgeries are scary by nature to people, I know, and the fear of something going imperfect having scary consequences.
At 15 I went from thinking my eyesight would magically come back someday becaise I wasn’t in pain to being driven to a surgeon’s to go over plans for morning surgery being told I would stay blind if I didnt do surgery right now and possibly it would fail anyways since it had been about six months so I was in a daze so had no time to worry, which was preferable, personally. I guess I did things in reverse in a way.
Actual glasses part: Anyways, as far as a reason for EDS-ers to consider switching to glasses, I started soft contacts at 18 and preferred them but had to stop after a few years. I had to get a double blepharoplasty, because they scarred the inside of my left eyelid and made my eyelid droop past my pupil so my eyelids had to be scraped away and a bit more to it. Wearing contacts would risk it reoccurring. I have gotten used to glasses finally, they are comfortable, and I just want to keep my risk low as I can of another big issue. But when my eyes were lopsided three years later, It took me like 5 doctors of all kinds to figure out it was scarring and not a Neuro issue or something, so that is something for EDS people to keep in mind as a risk with contacts (pretty obvious a guess with EDS, I guess, but it is considered rare and of course you likely will have to suggest it to the doctor. I could actually still see with both eyes, but drooping halfway down my pupil made the surgery not considered cosmetic and insurance covered. I imagine most people still would not enjoy their eyes looking weird before it got to that level though where it was still “cometic” level, even if you have great insurance.
I truly did feel ugly for years due to my awkward teen years in glasses, but it is so much easier, comfortable, and lenses can be made so thin and clear now, with such a selection of frames. It takes some adjustment, but even just slowly wearing glasses more and more people at a great risk of eye shenanigans can start feeling good in glasses if that is the healthiest option. Less irritation, convenient, cheaper than owning both for sure…
You look great in your glasses, if you don’t mind me saying! My frames are very similar.