Eyes & EDS

Our eyes are made up largely of collagen and being as though the collagen in Ehlers-Danlos Syndrome is faulty it stands to reason we may develop problems with our eyes.  Many of the issues we face are also common in the general population and as far as I know there is no hard data which demonstrates how much more likely EDS patients are to develop things like dry eyes, astigmatism or macular degeneration, but knowing we have a weakness in the make-up of our eyes we should be vigilant to any changes.  My Optician had heard of Marfan’s Syndrome but not Ehlers-Danlos Sydrome, so I downloaded a copy of Diana Driscoll’s ebook  which my Optician was happy to read.   It’s important to get regular, thorough eye check-ups and for your Optician to know you have EDS and the complications which can arise from that.

There is nothing wrong with my vision per se but I started wearing distance glasses, eg for driving and watching TV, when I was around 30.  The reason my vision had deteriorated is due to astigmatism which is a common finding in EDS.  Astigmatism is when the eye is shaped like  a rugby ball rather than being round like a football, which causes problems with focusing and makes the world blurry.  When I turned 45 I also started to need reading glasses.

In the last five years I’ve developed dry eyes, which feels like my eyeballs are full of grit which leaves them irritatingly sore.  In fact, some days they are so painful by the end of the day I have to lie down with my eyes shut and put a cold compress on them.  I use preservative free eye drops which you can buy from any high street Opticians which help but don’t totally alleviate the problem.  I’m sure my mast cells contribute and my eyes are starting to get quite bad at the moment as the tree pollen season starts, so I’ll resort to using anti-histamine eye drops instead.

I have mildly blue sclera which means that the white outer coating of my eyeball is thin.  I don’t think this causes me any problems but it is an indicator that you have Ehlers-Danlos.  Because my sclera is thin the capillaries in my eyes are clearly visible which again isn’t problematic but looks unsightly.

Photo of visible eye veinsThe biggest problem by far I face with my eyes are floaters.  These are due to debris floating around in the vitreous gel inside the eyeball, which cast a shadow on the retina and it’s this shadow which obscures your vision.  I first noticed I had a medium sized floater in my right eye around 10 years ago.  It was a bit irritating but I could move it out of the way if I moved my eyeball around and I only really noticed it when I was driving or reading.  Here’s what my floater looked like if I tried to read a book.

Ten years down the line and my floaters have gone berserk.  My right eyes is about 65% obscured by floaters and I now also have them in my left eye too.  No longer can I move them out of the way and they interfere with my eyesight to such an extent that I’m effectively losing my vision.  Reading and using the computer is tortuous, watching TV and driving give me painful eye strain and headaches, and you try taking a sharp photograph with eyesight which looks like this 😦

The presence of floaters can indicate a propensity to more serious problems like retinal detachment which is more common in EDS than the general population so although floaters in themselves aren’t considered a disease they can show up other issues.  If you have sudden flashes of light alongside floaters you must seek urgent medical attention.

Unfortunately the treatment for floaters is severely limited.  You have the option of paying for YAG laser surgery which breaks up the floaters (the laser surgery available on the NHS is NOT to be recommended), however they are still left inside your eyeball so over time the proteins simply stick together back again which seems to make the whole thing a complete waste of time.  The only other available treatment is a vitrectomy, where an incision is made into the eyeball, the fluid and debris sucked out and replaced by a saline solution.  However, this can cause infection, problems with pressure and in 80% of cases a cataract which then also needs surgery.  I’ve recently asked my Optician to refer me to the Hospital to discuss my floaters so I’ll see what they say.  There’s no way I’d have treatment at my local Hospital and will ask for a referral to one of the leading vitrectomy surgeons in the country, but even so it’s a daunting prospect.  The alternative, however, is to just leave the floaters which means effectively losing my sight.

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5 thoughts on “Eyes & EDS

  1. hejyork

    I’ve got eds and just found out the ligaments which hold my lenses in place are weak. It means my lenses wobble and makes any visual activity difficult to focus… It’s very frustrating and nothing can be done about it. Just wanted to comment to let other readers know as I didn’t know it was a thing!

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  2. lavenderandlevity

    I wonder if having prism because your eyes don’t focus right is somehow rated. I have truly terrible astigmatism and that visible blood vessels issue. It is so embarrassing! I also can’t wear contacts because between the prism, migraines and every version ever hurting my eyes, I gave up and accepted glasses. I just got my EDS diagnosis. Funny how little things like sclera can be related and you never knew!

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  3. Jan Groh

    Here’s a really good thorough talk by a local (to me) Oregon doctor I’ve met in our local support group 4 years ago on EDS and Eye health you might like. All of this is related, yes:

    Note, the volume is really low for the first minute or so, then it’s boosted when they realized it was too low. You don’t miss anything in that first minute, I promise – I was there. (Just introductory stuff, like hi, how are ya, who am I.)

    And see also: http://www.ehlersdanlos.ca/ehlers-danlos-syndrome-the-role-of-collagen-in-the-eye/

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