Hi, I was diagnosed with Usher Syndrome 20 years ago -- even though I've had it all my life. Usher Syndrome is an affliction that causes blindness and deafness. I am, at this point, leagally blind (like tunnel vision) and about 75% deaf (high frequencies - I can't hear birds and such). What's scary is the last time I saw my opthomologist, he said that I would be completely blind by the time I was 70. But would probably never go completely deaf. This disorder is such an imposition on my family and friends. I used to be very independant. But I am quickly becoming very dependant. I have never met anyone with Usher's, as I am told it is very rare, and very genetic. Is there anyone who is familiar with this disorder? How do you manage? How do you cope as your world darkens and fades?
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