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Blind and Visually Impaired Community

Full History - 2022 - 05 - 18 - ID#usrtcl
2
Retinitis pigmentosa (self.Blind)
submitted by [deleted]
[deleted]
Amazing_Ad7386 1 points 1y ago
Molly Burke, probably the most well-known VIP influencer there is, has RP. Check out her Youtube channel, she opens up a lot about it and has great informative videos, also on how to cope. She probably has one of the worst forms you can have, though, so probably your vision loss will progress more slowly. I believe it tends to get most bad in your 40s or something so you probably have some time to prepare.

Check out the Wikipedia article on RP. Many people have built successful careers and happy lives despite it in business and media. Always remember that visual impairment will be a big part of your life but it doesn't have to define you. You are not alone.
Folkloreic 1 points 1y ago
Thanks everyone for replying! I’m in the USA
TechnicalPragmatist 1 points 1y ago
Get in touch with your state and the blind services department it’s either called vocational rehabilitation, department of rehabilitation, or commission for the blind.


Get independent living skills training now. Get mobility and orientation training, and assistive tech training.

You can go to a center where you get intensive training on how to be blind and how to live blind. They will teach you all of that, you spend a year there.
ParakeetYeeet 1 points 1y ago
Resources will be dependent on your state/country and age. I'm in Massachusetts, USA and I'm part of the commission for the blind and have access to services for disabled individual such as low vision docs and rehab training. Where are you located and are you "working age"
KillerLag 1 points 1y ago
Have you checked into your local rehabilitation agency regarding some rehabilitation training? They can start teaching you some skills to help with vision loss (travel skills, life skills, etc). They may also be able to put you in touch with someone who has gone through something similar to talk about it.

Have you gotten genetic testing to see what type of RP it is?
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