Retinitis Pigmentosa Support Group

I think they're just saying that our genes don't match up with anything that has been identified to cause RP, they told me there are probably still a lot out there that haven't been identified yet.

And also my family's RP came out of nowhere it seems, starting with my mom. She said she has a great aunt who was blind but it was from Macular Dengeneration

Post edited by: sg11, at: 01/10/2012 10:03 AM

Seems that this is the going thing with the genetic testing. More times than not I hear people hearing the same thing. So far, that I'm aware of, there have only been 113 identifiable gen mutatians. Could be more by now.

Wondering what is taking my brother so long to get his results back. He went about the same time that you did. I'll have to give him a call and see if he's heard anything.

Glad you got your results back. How's the technology equipment working for you at work? Have they provided you anything yet?

My gene mutation is unknown as well. I gave blood at the university of iowa (I gave 15 yrs ago and then again last month). It is a research facility. My rp came out of nowhere as well. No known relatives. My mom gave blood too. They are in the process of getting blood from my dad and brother as well (they do not have it) to try and find my gene mutation backwards.

They've had my saliva for a long time and recently took my blood. I haven't gotten my stuff for work yet, DBS is taking their sweet time. I don't think it's even been ordered yet.

I saw a statistic saying that they can only match genes to a known mutation in about 50% of RP cases. It is interesting that no one in your family had it before your mom, but now your family seems to be showing more of a dominant pattern. Remind me again, who all in your family has RP?

Mine came out of nowhere too, so I'd been assuming it was probably recessive, but I suppose if I had a sporadic mutation it could have been a dominant form too huh? And my retina specialist said genetic counseling would be a waste of time

Till today only very few gene mutations can be teasted out of more than 200 gene mutations.That is the reason why pre-natal test for rp is not benificial. Its very complicated matter.With referance to device devloped by swidesh co only 90 mutations can tested. @ sg ,wow your rp can describe as Alien RP LOL

Me, my mom, and my cousin have RP, and possibly her sister and their mother but it hasn't been diagnosed. They show very, I guess faint signs of RP, some night vision loss but not much at all. Even my cousin who does have it has a much slower progression than mine, she is a little older than me and just now stopped driving at night.

One suggestion: Look at graduate programs in New York City and Toronto. Both cities have wonderful public transportation and medical facilities, and they are so diverse that using a cane or having a guide dog is no big deal. There are many elderly who use walkers, and most everyone (young and old) uses shopping carts, which, in the suburbs, people might associate with old age. People are helpful and friendly and no one is embarrassed because it's understood that everyone has some problem or another. Lots of people in those cities do not drive and do not own a car.

Does anyone wear bifocals? My low vision doctor said she thinks that I would benefit from bifocals. How do you like them if you wear them?