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• RP
• Posted: 2009-10-20 18:34:58 By Jennifer H
• Hello, I am a 39 yr old female. I just found out yesterday that I have RP. I never heard of RP until this past Aug. I was actually glad to finaly have an answer to many situations. Like walking into things, tripping and being worried about going into dark places.............

• Never heard of RP?
• Posted: 2009-10-21 23:59:22 By Susan R
• HI Jennifer, I am Sue and I am 52 yrs old and was diagnosed Yesterday myself. However I have always known about the disease as almost everyone in my family has it. No one in your family has it? Keep your chin up!! I know it sounds bad but life could be worse. Now I am sounding like my mom I'm sorry. But you are young yet also and I think in the next 5 yrs research will have an answer for us. Son't dwell on it and just stay healthy and active. Stay out of dark places! Take care of you.

• Posted: 2009-10-23 01:04:17 By JACSON M
• well i had RP from i time i was 8yrs old im 35 now..i can say sometime its hard but i learn to work with what i got.just like Susan said stay out of dark places,i dont do anything i know i cant do like drive at night,drive in the rain.it just got to a point where i had 2 stop working..n now i get SSI..say if u didnt know u can get SSI for RP,it took me 4months.thats something u can 2 look into there r benefits out there you need to look into

• Posted: 2009-10-25 20:18:15 By Brian E
• You get SSI but you still drive during the day time? Why does that seem strange. I gave up driving two years ago but am probably a good 5+yrs away from thinking about SS.

• Posted: 2009-10-25 23:51:26 By racer x
• I too find the driving and getting SSI a little strange...hmm ...i have known about my rp for quite a while and personally am tired of hearing about all the clinical trials that are suppose to be promising..i had great hope years ago when i found out about my RP but now? eh not real hopeful. not trying to be the downer for jennifer but i and alot of others have heard for years now that something will be out in oh 5 10 years and those 5 10 years have come and gone...sux

• RP
• Posted: 2009-10-25 16:50:20 By Kristin M
• Hey Jennifer,
  My name is Kristin 43yrs old and live in Oregon. I too found out I have RP about 4 years ago. Never had heard of it nor knew I had a problem. I too was bumping into things or tripping on things and having some falls. The hardest part was loosing my drivers license.....of course, now, I have adjusted and do just find without a car. Just hang in there and know that with how things are going, we will have an answer and hopefully have some if not all our vision back!!
  Take care and know you have many friends via this nnetwork for us that are seeking direction on tthis journey in vision loss and blindness!!

• RP
• Posted: 2009-10-27 21:36:58 By Gina A
• Jennifer...
  I will be 39 next month and I was diagnosed in early 2007 with RP. I am currently in the end stage of the CNTF4 study at the Southwest Retina Foundation in Dallas. They put a implant in my right eye (just found out last week which eye it was in) I have decided to have the implant removed after it has been there for 2.5 years...the left eye is a little worse than the right, but after talking to my family I think i will have it removed to be eligible for future studies. Don't stop living...I have a 16 year old and 12 year old both boys...they help me out a lot....I still take them to the movies, which is stressful until I get to my seat, but I refuse to let this control my life. I am still allowed to drive at this point; however, they suggest no driving at night which i don't....I still have 35% visual field and my visual acuity is still quite good. Good luck and pray....even if a cure is not found, pray that God will help you to stay strong and positive. My husband doesn't baby me...I think he is still in denial and doesn't want to think about what may be in store for us...