Stories of Retinitis pigmentosa

STORY
Retinitis pigmentosa stories
It's pretty simple.  Started when I was 22 or so. My mom has RP and my sister has vision trouble as well. I knew I had RP rather soon after but spent years fighting the changes I needed to make to my lifestyle. Hell, I still do. RP folks tend t...
Retinitis pigmentosa stories
I'm not going to write personal information here. But I do encourage you to contact me if you have RP or Coats Disease. I have never met or known anybody else who has Coats, so that would be particularly interesting. We might be able to share informa...
Retinitis pigmentosa stories
I was diagnosed with autosomal dominant Retinitis Pigmentosa when I was 14. I inherited it from my dad. I was declared legally blind (less than 20 degrees of vision) when I was 20. I am currently 28, and I have 5 degrees left. I also have cystoid mac...
Retinitis pigmentosa stories
Father of a beautiful girl, 7 years of age with RP
Retinitis pigmentosa stories
Autosomal Recessive RP - gene PDE6B pathogenic mutation heterozygous (c.892C>T (p.Gin298*)) I was diagnosed with RP in 2012, aged 32, after my boyfriend at the time insisted I go and get my eyes checked. He once brought me a glass of water ...

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Retinitis pigmentosa forum

QUESTION
Question 281
Another question... Do you still have a job? Or is it too difficult to work with your RP? I do have a job, but it is not so easy and it is very exhausting for my eyes...
Question 278
how can you live with this disese?
Question 280
I love to travel! I have a vision of only 3°, but I really want to see the world! The noises, the smell, the kind people, to be on the road, I love it! Where have you guys been to and what are your favorite destinations?

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Statistics of Retinitis pigmentosa

13 people with Retinitis pigmentosa have taken the SF36 survey. Mean of Retinitis pigmentosa is 2308 points (64 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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