I have autosomal dominant Retinitis Pigmentosa. My grandfather, father and brother also have it. However, until my father was diagnosed at 45 years of age, we didn’t realise that both he and my grandfather had it.
My father was still driving when he found out. He is now into 70’s, still independent and has useful vision of around 30%. He has two sons from his first marriage, one of whom was diagnosed with RP in his late 20s. My brother’s rate of vision loss has been faster and the proportion he can now see is probably around the same as our father. I also have a sister from my father’s second marriage. She and I are twins. She does not have RP.
I was diagnosed in my early 30’s following the birth of my first son. Seven years and three kids later, I have stopped driving of my own accord. Even though I can still legally drive, my blind spots are in the way and I don’t want to take any chances. I have what is called sectoral RP, so currently a few sectors on the sides of my vision are affected. The rest is still pretty good. My night vision is also ok. I have to be up during the night a lot for the baby and I manage mostly without turning on the lights, using only the small glow from the baby monitor.
I work in front of a computer a lot and usually struggle with glare, especially in the office where they have a very bright set up for the lights. I no longer go to concerts or movies as it’s very painful for my eyes. I don’t enjoy going to crowded spaces, the beach or swimming pool as I am not able to watch the children properly and I panic. I am socially active, running a few social groups in my area and am also in the school committee. It is frustrating to switch from being very independent to being reliant on other people, but this is something I have to get used to.
There aren’t too many people I can discuss my situation with as those who hear about it react in such a strange way. As if I’m an invalid, or don’t know what I’m talking about, or don’t try hard enough to cure myself. It is also harder to tell people that know me from my “normal” days. I find it is easier to reveal to people I meet now as they don’t know me in any other state. I have basically adjusted to the idea of having RP and have accepted it. It was not an easy path to take to acceptance but I have figured that out of everything else I could have received in terms of illnesses this is not the worst. It doesn’t hurt. I won’t die from it. Chances are pretty good that I will keep some useful vision over the years. I can still be independent.
I really hope for a treatment, if not a cure. It makes it easier to cope when I read about the progress of the clinical trials.
