Retinitis Pigmentosa Support Group

Hi All

I'm new to this site. Was diagnosed with RP some time ago, but been living a life of denial. Would like to speak and meet new people who are going through the same condition as me.

Welcome to the group! This is an awesome place to meet with other people dealing with this condition. It has been a tremendous help to me, just knowing that I'm not alone. I have a wonderful family that is very supportive, but they don't really know what I'm going through since they're not actually experiencing the visual loss. Here you'll find others that are experiencing the same ups and downs of this disease. So welcome, and feel free to post often!

Welcome Koko -- Would love to hear a little more about you -- when were you diagnosed, how much vision do you have, what are your struggles..... you can bet that at least one of us (most likely ALL of us) will be able to relate. Great group of folks here and lots of good posts have been made if you have the time to wade through them. WELCOME!

Hey Koko- you've come to the right place! I invite you to check out our Articles for all sorts of good info on the latest greatest testaments, feel free to search the site for topics that you are interested in, ask lots of questions,... the pool's open... DIVE RIGHT IN!

CHAT SOOON-

Wigz

Hi koko welcome to this awesome platform for every Arpean arround the globe. As our FightMom stated,we also like to know more about you and your feelings over RP.

Hi everyone, so great to have so many replies and words of support. Thank you to you all. I was diagnosed in 2007, a year after having my little boy. I did notice the big change in my vision, and I have read recently that vision appears to worsen after pregnancy, dont know if anyone experienced that too. I will certainly read through all the articles, looking forward to getting to know you all. I will be telling you more about me soon, but I would also like to know more about you too.

Welcome Koko! Hope you're able to find lots of answers and support here! This is a great place

Hey Koko -- just thought I'd mention that I had no clue I had a vision problem as I didn't trip over stuff, etc. But several months after I had my first born, I went to the eye doctor for a normal eye exam and he discovered pigments on my eyes. Many tests later, they said I had 25 degrees of vision left. So, I don't know if I had that little of vision for years or if the pregnancy sped it up. Does makes me wonder. I do know that after my second child was born, my vision remained stable at the 25 degrees and then dropped to 20 degrees when they were around 4 or 5 and stayed at 20 degrees nearly until they graduated from high school. So, the disease is a mystery to me. It's been 35 years since I was diagnosed and am now at 10 degrees with pretty clear central vision. I feel very fortunate to have retained vision for so long.

The pregnancy issue does make me wonder though.

HI Koko and welcome. As most would say we wish we met under different circumstances but it is what it is. I have learned alot from the folks on here and it is comforting to know that I am not alone. Feel free to reach out and ask questions, any question, and learn all you can. Find members from your area (which is?) since they may know resources that directly affect you. Be safe and smile every day.

I had my first born a year ago March 13 and I noticed quite a bit of change in my vision. aways had trouble with peripheral vision and night vision but it seemed to get worse after pregnancy.I recently went to see the eye doctor and she diagnosed me with RP after a few exams and said I have probably had it my entire life from what the picture of my eyes revealed. I am wondering if pregnancy sped my disease up too.