Ocular Manifestations of Ehlers-Danlos Syndrome

It’s hard to find a comprehensive source for the ocular problems experienced by patients with Ehlers-Danlos Syndrome.  Our very own Diana Driscoll, O.D. wrote this article, placing the most up to date information in one place.

Our practice continues to be sought out by patients for help in their quest for answers to the potential ocular complications related to Ehlers-Danlos Syndrome, such as dry eye syndrome and keratoconus, as a result the number of patients we see with EDS grows rapidly.

This updated eBook includes many color pictures and references. It is the only book covering EDS and the eye. Ehlers-Danlos Syndrome: Your Eyes and EDS is now available on Amazon.com

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10 responses to “Ocular Manifestations of Ehlers-Danlos Syndrome

  1. Hi,

    I have EDS III, for the past few months I’ve been having a proper go with contacts after coming to the conclusion laser surgery (in part thanks to your advice) is not worth the risk.

    I’ve found problems with comfort but only with in left eye which is ‘unhappy’ i.e. I can always feel it. The right is by and large totally fine. I’ve tried drops and a couple of different solutions. Also the only brand out of 5 I’ve tried so far which is visually ‘good’ is the Proclear Toric. All the others don’t seem quite right especially in the left. I’ve seen two different optometrists (one being a contact specialist). Could be my issues be EDS related or something else? Do I have any further contact lense or other options? I really want this to work and not have to rely on glasses as I can’t get back to driving without eye correction.

    Thanks,

    David, UK.

    • Contact lenses may still be the best options for you but may require a little more time to get one that fits well. Your problem is probably not directly related to EDS. When contact lenses pop out a couple of things come to mind, dry eye syndrome being one possibility and the other being the lens fitting to flat on your eye. I would go back and see if there are some other lenses the optometrist could use to help you and also look at dry eyes.

  2. Vampire Contact Lenses

    Thanks for giving the handout. It is helpful resources.

    Cheers,

  3. Thanks for the advice.

    I’ve not had a lense pop out at any time but yes there is a degree of dryness, not massive though.

    Realistically in terms of supply there’s only one more soft lense left to try and then that’s it.

    I’ve been told the Proclear fits well in terms of lining up.

    I’m wondering whether it’s a nerve thing as the difference in comfort between my right and left eye is so marked.

    In the left eye there is little or no myopia, the issue is a 1.25-1.50 degree of astigmatism which precludes a number of lenses.

    It’s all extremely frustrating, I get headaches from wearing corrective specs. Oddly I don’t get them when wearing non corrective sunglasses but it’s not a sunlight thing.

    • If comfort is the issue and the lenses are fitting well, then I would really consider evaluating dry eye syndrome as the likely culprit.

  4. Dry Eye can be absolutely horrid to deal with
    EDS unmanaged could be an absolute nightmare

  5. I have EH type 3 and developed severe post sub-capsular cataracts over the course of 3 months at age 58. ‘No known cause, although both parents had cataracts and my father had EH, early catarcts, and retinal detachment after cataract surgery. I live in Florida and was referred to a very experienced cataract specialist in a nearby city, and I and took the handout on the link from this site when I first consulted him . He found it very useful and did the following in addition to his usual procedures:
    1. He prescripted Bromday (bromfenac) once-a-day eye drops for 3 weeks pre-op and 6 weeks post-op to prevent swelling that could cause retinal detachment because the handout mentioned collagen defects and higher-than-usual retinal detachment. (He usually does not use eye drops.)
    2. He had me examined by an on-site retinologist the day of my initial consultation to make sure I had no holes or tears in my retina that needed lasering before surgery.
    3. He instructed me to see a retinologist in my city within 1 week after surgery, and then again at 3 weeks and 3 months after surgery, even if I had no symptoms of retinal detachment. The cost has been minimal (about $75 per visit).
    4. Since he does not otherwise use eyedrops, he puts all steroids & antibiotics into the jelly part (vitreous humor) of the eye during surgery. Knowing of my EH & family history and based on the handout, he put extra steriods into my eye during the surgery.
    5. He recommended against an adaptive lens, noting that I had an unusually large pupil dialation and an irregular cornea, to avoid glare, although he otherwise generally uses them. Instead, he recommended and used a biaspheric lens (in my case, a Lenstec’s Softec HD).
    6. He had me wait at the hospital for 4 hours after surgery so he could take my eye pressure again, although fortunately, it was fine.
    7. I had cataract surgery on my first eye 1 month ago.
    Three days after surgery, I had 20-20 vision (it was 20-400 before) and no pain (although I usually have pain with everything, even teeth cleaning due to very sensitive skin, gums, eyes, and joints). I have seen the retinologist twice for the first two follow-ups and my retina has not detached.
    The handout was really useful! I doubt my eye doctor would have taken all these steps had I not brought it. I saw that he had put it in my chart and highlighted parts of it. I would definitely recommend that anyone with EH seeing an eye surgeon for cataracts take this handout, and maybe ask their doctor if any of the precautions my doctor took would be worthwhile in their situation.

  6. I have classic EDS and I went to the Optometrist today for a routine eye exam and he did a test where I had to follow his finger with both my eyes until he came towards my nose and my left eye would look away to the left (on its own) each time he did the test. He kept repeating it to see if It continued to do that and each time it did. I had no control over it. He said the thinks their is a weakness in my eye. I told him that I occasionally get blurry vision that lasts for several minutes and it comes and goes. I told him that I just had a full physical with my Internist in May and my blood sugar was normal and my blood pressure is actually perfect (it runs a bit low) and everything else was very normal. He was concerned about that and about my left eye doing as it did. It has also became a good bit weaker as far as my prescription since my last visit and it is a good bit weaker than my right eye. I am nervous about this. Any recommendations?

  7. Could you please share the link to the handout you are referring to? Sorry, I just don’t know exactly which handout you are referring to. Thanks so much for this post too.

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