Usher Syndrome
Wednesday August 9, 2006
When I was in college, one of my best friends found out she had usher syndrome. I watched as she made a very painful adjustment in her life, coming to terms with the fact she was going to lose her vision.
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Comments
I am one of perhaps a great many more deaf people who aren’t deaf-blind, but who have Usher’s Syndrome. I grew up deaf and only learned about the retinitis pigmentosa in college. At the time the doctor said I probably would retain my central vision till late in life, and now in my 50’s I still have enough vision to drive and have not lost more than a wedge of side vision. Night vision is still pretty good.
The point of this is that there may be a greater percentage of people like me who aren’t counted among the deaf-blind and who may otherwise never know they have Usher’s Syndrome. The concern here is that two such individuals may marry and have children with a more severe form of Usher’s, so all people who were born deaf should ask their opthalmologists to check their retinas and peripherial vision.
DPG
A fascinating book about the adjustment to U.S. is
Orchid of the Bayou by Cathryn Carroll and Catherine Hoffpauir Fischer. In addition to U.S., the book evokes many lost worlds: the Louisiana bayous, deaf schools in the 40s, train travel.