Eds and eyes!

Just a quickie everyone - I've just found out I need surgery on my eyes for small retinal holes and a build up of fluid. As the eye is made up of 80% collagen I wondered if there was a link to my eds. anyone else experience of this?

The consultant didn't have much experience of eds but knew there were connections between glaucoma and eds.

any info greatly appreciated :) x

15 Replies

  • Yes, there defiitely is a link to EDS and the first thing my genetics team did when they diagnosed me was to send me to the hospital for an eye test where they told me I was at high risk of retinal detachment and other retinal problems, so if I saw any floaters or any 'curtain' or any 'lights' I was to go straight back there. I believe there is a higher risk of macular degeneration as well, and cataracts.

  • Great reply...very important!👏👏👏

  • Yes, definitely in my case! Since childhood I've been able to do all sorts of extreme wobbly tricks with my eyes...they are ultra loopy! I totally agree with whatnext: for years I have been experiencing all the issues she mentions which my eye medics are watching very closely. I also have systemic lupus & sjogrens, so am under treatment & annual monitoring at an NHS eye clinic. I have a daily eye treatment routine involving dry eye prescription meds. My lupus meds are very powerful & affect the eyes, so this makes monitoring even more crucial in my case

  • I don't know if I'm allowed to send you a link, but this site inspire.com/groups/ehlers-d... has a huge amount of people who are so informed about it I thought I'd read up everything until I got there and have learned so much in a week!

  • Is this a US based site? I was having a look but it won't let me see unless I sign up, but figure there's no point signing up if it's US based.

  • Yes, it is US based, but they have so much information on there that is relevant. I really recommend it.

  • Yes, it is US based, but the general information they give there is HUGE. I'm 65 and was only diagnosed this year but hadn't realised that the anxiety and depression I've had all these years was linked as well as so many other aspects. When anyone new joins that group and asks about what symptoms are relevant they seem to send a list of links which are really amazing and so informative. The vast majority of posts on there aren't area relevant but are general EDS knowledge based.

  • Thank you, I will take another look at it. :)

  • This is one article that I found useful ednf.org/sites/default/file... - if I can find the other one, I'll post it.

  • Another article you may find useful: ncbi.nlm.nih.gov/books/NBK1...

  • Thanks for the replies and comments guys - will definitely have a read of some of those articles x :)

  • Yes, there is a link. When my genetics team diagnosed me with EDS they sent me for a heart test and an eye test, and the eye chap told me that I'm at higher risk of retinal holes etc. and if ever I get any sudden changes in eyesight, more floaters, or flashes of bright light I'm to go there immediately, because EDS makes you more susceptible to retinal problems. My mother actually had detached retinas and went blind from it. In those days the surgery wasn't as good as it is now. But it's something that all EDSers should be aware of, and get urgent help if they notice any signs at all.

    I hope your surgery goes well for you and you're back to normal quickly:-)

  • This is frustrating, my eye doc told me yesterday that EDS doesn't affect the eyes! I know it does and to be fair it wouldn't change the excellent treatment I already get but it is annoying none the less.

  • That's worrying that they aren't aware of that! Perhaps next time you see them print out some info for them:-)

  • Thank you, I will do that. I just assumed they would know - lesson learnt!

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