Sticky Blood-Hughes Syndrome Support

Does anybody know if theres a link between cupping of the discs and optical nerve damage in APS patients?

Hi all - I had a stroke a couple of years ago and although it took two years to diagnose, and a cateract to add to the equation my opthalmic consultant says the stroke affected and damaged the part of the brain that controls vision rather than the eyes.themselves. However after the stroke my vision should have remained the same yet it still seems to be deteriorating. One optician told me they do see people with auto immune conditions with cateracts, and this sort of stroke but unable to explain whats happening to me. He says I have the same symptoms as somebody with glaucoma but i dont have glaucoma. Does anybody know if theres a specialist hospital who deals with auto immune conditions and the link between eyes. I want a second opinion as I cant believe I shouldnt be getting treated like someone with glaucoma. I honestly believe im just waiting to go blind. He says he's only see one other woman with this condition and she went blind but cant tell me if it will happen to me. Thanks

4 Replies

Hello, I wonder if this would be a good option:



I would echo Mary it is Britain's leading eye hospital. My own GP is having an eye op there in December and medics usually only go where they feel comfortable.

My stroke also affected my sight as it happened in the right occipital lobe and caused a left sided central vision deficit called, Hemianopia. You think it is your left eye thats gone but in fact its just the damage in the brain causing a blind spot seen on the opposite side from which the stroke took place. Thankfully for me I was lucky and over time this has almost all come back.

Do you think it could be a coincidence that you have developed a cataract on the same side that has been affected by your stroke? Cataracts can be easily removed by surgery but as you say the underlying cause needs to be carefully evaluated and because of your condition you should be under a specialist eye consultant rather than just an ophthalmologist. I would defiantly ask your GP for a referral to Moorfields if possible.


Hi thanks, it was hemianopia thats caused the peripheral vision loss on the right side of both eyes,and i assume it is more than a coincidence that its the left eye that developed the cateract too, Never thought of that before. I have had the cateract operation and although it was successful the new lens doesnt move with the eye so i have blurring on the left side of that eye too. All my vision has b een left double and almost 3d. I will contact my GP and ask for an eye hospital though thanks for that, i thought opthalmics were the top of the proffession, cheers and hope your all having a 'well' day!


My sis-in-law has APS and has eye and ear issues. She has never stroked. Hope you get answers and relief very soon. Lene'


You may also like...