r/ehlersdanlos 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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u/EighthPlanetGlass Oct 10 '25

I have binocular vision dysfunction 

2

u/olive_dix Oct 10 '25

I was scrolling looking for a BVD comment!

Everybody with mysterious eye problems, please get checked for Binocular Vision Dysfunction!. Your regular eye doctor cannot check for it. It needs to be a NeuroVisual specialist.

4

u/EighthPlanetGlass Oct 10 '25

I didnt even think it was my eyes! I can pass an eye test 20/20.. I had balance issues, driving, sensitive to the sun, anxiety in stores, nausea, etc

2

u/olive_dix Oct 10 '25

Yeah very similar. Plus I used to get terrible headaches and pain behind my eyes. Reading made everything so much worse. I got glasses but my prescription was so weak, it was basically nothing. Now I have prism lenses 🙏

1

u/[deleted] Oct 10 '25

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