EDS and eye degeneration

[AmandaG]

I am trying to help my sister! Myself and five year old have EDS hypermobility. I have a sister who isn’t diagnosed but is having some unexplained eye issues. Wondering if anyone who is diagnosed is having the same problems.

My sister is 39 and last year was being checked for retinal detachment. After testing they concluded that wasn’t the problem but they don’t know what the problem is. Her eyesight is continually getting worse, she has lost peripheral vision in one eye and they say her eyes look like swiss cheese! The tissue is just falling apart! Has anyone heard of this??

Thanks for any help or suggestions!

Amanda

[Barbara]

Hi Amanda,
Have you looked at Dr Driscolls book, the kindle version is on Amazon, at a very reasonable price, titled:-

Ehlers-Danlos Syndrome: Your Eyes and EDS

Barbara
(UK)

[Dr. Diana]

I am trying to help my sister! Myself and five year old have EDS hypermobility. I have a sister who isn’t diagnosed but is having some unexplained eye issues. Wondering if anyone who is diagnosed is having the same problems.

My sister is 39 and last year was being checked for retinal detachment. After testing they concluded that wasn’t the problem but they don’t know what the problem is. Her eyesight is continually getting worse, she has lost peripheral vision in one eye and they say her eyes look like swiss cheese! The tissue is just falling apart! Has anyone heard of this??

Thanks for any help or suggestions!

Amanda

Hi Amanda, Swiss-cheese — is that in the retina? Do you have a fundus photo? Yes, (thanks, Barb) the book may be helpful, as would images. 😉

[Author]

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