Im 22 And Have Rp

well i found out i have RP a month before my 21st birthday. since then my life has been a little different. I instantly couldnt drive anymore and i lost my job. i guess this is the first time ive ever spoken about it since. I want to know if its normal that when the subject is brought up, or i think about it i just go blank. Its such a wierd feeling to explain but i honestly feel as though my body just goes numb or something and i dont ever know what to say. I dont know anybody who has an eye diesease or who is going blind so im not sure how your meant to react or deal with it. Everytime i go to the specialist he tells me its worse and i just stopped going becasue im sick of the negative feedback all the time. Im concerned about my future, im at the stage in life now where my partner and i are wanting to start a family, and i was excited, untill people close to me starting asking if it was a good idea because of how my eyes are decreasing and how will i cope with looking after a child if i cant see. Im not sure how to respond to that, i know there must be families out there that have had a baby under different circumstances, but how do they cope?? is it selfish of myself to want a family? i guess im just looking for people in simular situations to me, im not sure if how im feeling is normal!!!!!!!
joco89 joco89
2 Responses May 21, 2012

I was diagnosed around 19 after experiencing nyctalopia (Night Blindness) while serving in the Army, I'm turning 32 this month, while RP progresses differently for everyone, I am down to a very small pinhole of blurry vision. I was a little discouraged at first as well, but I have found that with some modifications to how I do things, and focusing more on what i can do, instead of my limitations, I have been able to be a good father to my 11 yr old daughter. I hope you can find a balance in your life to continue doing the things you love, and hope I was able to provide you with a little light in a dark time.

I have an uncle who has RP, but is now blind. Like you, he always saw himself as a father but was worried as to what he could pass on to his children and how he would cope in terms of looking after them. My uncle lives a very happy life and is able to do most things by himself (he does have is own guide dog who is a major help to him); he shops, cleans the house, cooks and runs his own massaging business. A couple of years ago, he and his wife decided to have a child together. Recently, they split up and now have shared custody of their son. All I can say is that my uncle is a fantastic father to his child and is more than capable of looking after his son himself - he looks after him 3 times a week. He feeds him, baths him, tells him stories and takes him out to playgrounds. I don't think it is selfish of you to want a child at all, but, as you probably know, there are risks involved. However, in the instance of my uncle, he took the risks into account and has had a healthy son who won't have to deal with RP himself. I hope this has been of some help and I wish you all the best for the future.