Blind and Visually Impaired Community
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About a year ago, I was diagnosed with Norrie disease. I'm skared of my future, and I'd like to hear other peoples perspectives / tips. (self.Blind)
submitted by Master-Abalone-3146
So for the past year I've basically chosen to not reach out to others who have the same condition, but at this point I basically know nothing accept for the obvious and the fact that I'm keeping myself guessing is bothering me.
I don't know what I'd like answered, but I do want to hear what others who have it have to say on how they live with it and how it progresses. I know it's different for everyone but there has to be a silver lining somewhere.
Thanks in advance, and I'm sorry if this comes across as chaotic.
I don't know what I'd like answered, but I do want to hear what others who have it have to say on how they live with it and how it progresses. I know it's different for everyone but there has to be a silver lining somewhere.
Thanks in advance, and I'm sorry if this comes across as chaotic.
BooksDogsMaps 5 points 1y ago
I can‘t help you personally, but I would recommend reaching out to the Norrie Disease Foundation, a charity run by affected people and their families in the UK. They are working together with a hospital in London where research on a possible treatment is being done.
Master-Abalone-3146 [OP] 2 points 1y ago
Thank you so much for the info. I definitely will.
je97 2 points 1y ago
I'm shocked. I was given to understand that you can either be totally/almost totally blind from birth or be a carrier, I didn't know you could be diagnosed later in life. How did this come about?
Master-Abalone-3146 [OP] 1 points 1y ago
Around three years ago, my dad noticed my echolocation was getting worse and I couldn't understand people as well as I used to when the TV was on, or in other situations where something was making noise and people were talking to me at the same time. So off to the audiologist I went. They found out I lost around 40 DB in my right ear, and about 45 in the left one. That was quite the shock, but the cause was not yet known so that left a lot of questions unanswered. A year later I went for a check up, and I mensioned that I was worried about it being progressive. Gut feeling maybe, I don't know but long story short they only followed up on that a year later. I went to a Hospital in Groningen (a province in the Netherlands) where they took my blood, and a few months later I got the news.
codeofdusk 2 points 1y ago
I have Norrie. Feel free to PM!
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