Anyone else got Retinitis Pigmentosa??

[andlipsticktoo]

Was diagnosed last year. No longer allowed to drive and am struggling to read now.
Have not been given advice or support or where to get it from by consultants. Any ideas?
Feel like an old lady but am only 38!

Sorry to hear that

There is a British RP Society here in case you don't have that already - they have a helpline.

Thanks W W. Have just looked at the site. Not sure I'm ready to join an RP group yet but was interested in chatting to some 'regular' mums on here.

Sorry to hear about your diagnosis andlipsticktoo.
I have a friend who has rp. I'm not sure when she was diagnosed - must have been when she was quite young as she knew about it when I met her about 30 years ago. She is now in her mid 50's and still managing to work part time. She's not allowed to drive any more but otherwise tries to make sure that it doesn't stop her from doing things. Unfortunately both of her children have it but they are both at university and doing well.

@andlipsticktoo i was wondering how you are doing now and what your first symptoms were? I am under investigation at the moment.

I know a few people with RP through volunteering with guide dogs. I don't know if you've looked on their website but they (and the RNIB) offer a lot of practical support that's nothing to do with dogs.

RNIB also have counsellors who can also offer emotional support, they are called ECLOs and you can check online to find one in your area.