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...
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...
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...
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 ...
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...
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?
24 people with Retinitis pigmentosa have taken the SF36 survey. Mean of Retinitis pigmentosa is 2125 points (59 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
