Patients Cold Agglutinin Disease

Living with Usher syndrome: Share your experience!

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malc66

16/08/2021 at 16:43

Hello, am new here.

I have usher syndrome and have been registered blind for quite a few years. Also have glaucoma which has closed down one eye and affected central vision in other eye. I manage quite well day to day and keep as busy as possible.

Are there any other usher people on here ?

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Courtney_J

Community manager

18/08/2021 at 18:00

Hello @malc66‍, thank you for opening this discussion and welcome to Carenity! Our Usher syndrome community is still growing, so we don't have a dedicated community space quite yet. emoticon cute

@faroes‍ feel free to come discuss with malc66 here!

For our other members, are any of you familiar with Usher syndrome? If so, what do you know about it?

Take care,
Courtney

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Courtney_J, Community Manager, Carenity UK

Living with Usher syndrome: Share your experience! https://www.carenity.co.uk/forum/cold-agglutinin-disease/living-with-a-rare-disease/usher-syndrome-4277 2021-08-18 18:00:45

faroes

26/08/2021 at 09:39

@Courtney_J @malc66 Hi, sorry I missed this notification some how! It's actually my brother that has Usher, he has type 2. emoticon cute

Living with Usher syndrome: Share your experience! https://www.carenity.co.uk/forum/cold-agglutinin-disease/living-with-a-rare-disease/usher-syndrome-4277 2021-08-26 09:39:08

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