Blind and Visually Impaired Community
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Question about Ushers 1 (self.Blind)
submitted by Murder_0f_Crows
I’m 20 years old and I was diagnosed with Ushers 1 (the MYO7A gene to be specific) just over a couple months ago.
I’ve been trying to research online but the answers are contradictory. Does this form of Ushers progress to total blindness or does it vary?
I’ve been trying to research online but the answers are contradictory. Does this form of Ushers progress to total blindness or does it vary?
codeseeker5317 3 points 1y ago
I'll try to answer you the best I can.
My brother has type 2 Ushers. Was born with profound deafness and wasn't diagnosed with RP until his mid 20 (45 now).
The RP has progressed and he is now legally blind. Has been for the past 15 years or so. While the drs tell us he's likely to retain some residual vision, his field of view continues to shrink a little every year as shown by the Goldman Field test.
If I remember correctly, the severity of type 1 may not reduce your vision to the same degree. However I'm not qualified to make this distinction and it's something to discuss with your doctor.
Start laying the groundwork for the future resources you'll need just in case. Learning braille, tactile and pro-tactile sign language (if you are hearing impaired). Finding advocates and SSPs to help you. Learn what government and community resources might be available to you. These things may be more difficult to acquire later as your disability worsens.
My brother has type 2 Ushers. Was born with profound deafness and wasn't diagnosed with RP until his mid 20 (45 now).
The RP has progressed and he is now legally blind. Has been for the past 15 years or so. While the drs tell us he's likely to retain some residual vision, his field of view continues to shrink a little every year as shown by the Goldman Field test.
If I remember correctly, the severity of type 1 may not reduce your vision to the same degree. However I'm not qualified to make this distinction and it's something to discuss with your doctor.
Start laying the groundwork for the future resources you'll need just in case. Learning braille, tactile and pro-tactile sign language (if you are hearing impaired). Finding advocates and SSPs to help you. Learn what government and community resources might be available to you. These things may be more difficult to acquire later as your disability worsens.
HeftyCryptographer21 2 points 1y ago
It seems like it does, but it is definitely variable.
TechnicalPragmatist 1 points 1y ago
In case you do training is good now learn to adjust and adapt there are tools the other poster had some good suggestion. Learn to use a cane, assistive technology and independent living skills training now.
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