Retinitis Pigmentosa Support Group

Hi everyone!

I am female, age 30, and I was born with atypical retinitis pigments. Until I visited a great specialist (on my 16th birthday), doctors said that I had a rod/cone deficiency, coupled with nearsightedness.

I am legally blind, even with contacts or glasses. Without, I'm 20/400 in my left eye and 20/300 in my right. With, I am 20/300 and 20/200 respectively. This was the case until at least a year ago, anyway.

As far as I know, I have no family links to the disease. My paternal grandmother might have had it, but she died when my father was four. Anyone else? They either don't/didn't have it, or there's no way for me to know.

I'm feeling a little down today. I have a very important job interview on Friday, which means that I had to cancel my specialist appointment for the day before. The strong dilation done there affects my vision for days. It's definitely not your usual dilation that you get at your annual vision check up. I've also learned that if my husband and I want to have kids (which we're now planning), I could lose a significant amount of vision during that time. This is terrifying to me.

But, I hate ending things on a sad note, so I'll add that I'm happy that I've had 30 years of usable vision so far. I hope to keep this trend going.

Hi rm82! Welcome to the forum, this is a really nice group of people and I hope you find the support you're looking for. Like you, I'm also 30 (well, almost, as my birthday is in August!), and my husband and I are also considering kids sometime soon. I've heard the pregnancy/RP thing, too, which makes me nervous as well. I think right now there is only anecdotal evidence that this is the case-- I read somewhere (perhaps here on this forum! )that Johns Hopkins wanted to do a study but could never get a big enough participant group of women with RP who were pregnant.

The other thing that I, personally, worry about is heredity: I have dominant RP from my dad, so my kids would have a 50% chance of inheriting the bad gene. But, my doctor, who is also a researcher, anticipates a cure in less than a decade, so that gives me a lot of hope!

Best of luck with you interview-- let us know how it goes!

Thanks for the fast and thoughtful reply! I'll admit that the idea kind of ruined my week. My parents have been wanting us to have kids for some time, and we only recently agreed that now would be the time. I've been getting excited about it! I've also stopped taking my vitamin A palmitate, but now I want to run back into its loving arms, haha!

I wish I could say for certain of anyone on my dad's side had RP. Being "atypical," it leaves everything up in the air.

Welcome RM82 -- I understand your hesitation and have heard the same thing about pregnancy but I don't know of any studies that proves it. As far as your atypical RP, do you have autosomal recessive? The likelihood of you passing that kind down to your children is pretty small as both parents have to have the mutated gene. Anyway, I was not diagnosed until I was 22, right after I had my first child. I was 25 degrees at that time without even knowing I had RP. I retained 20 degrees after my 2nd child was born all the way until both kids were out of high school. I am now 58 and have 10 degrees left but good functional central vision and am enjoying my grandchildren.

I know all cases are different, but I wouldn't trade not having my children and grandchildren for anything. Good luck on your job interview AND your decision on whether to have children or not. Hope to see you post often.

Fight4Sight:

Thanks so much for sharing! Unfortunately, I've yet to be in a situation where I've had genetic testing done. I've inquired about it, but it just... hasn't happened? I haven't really pushed, though. I'm not too concerned about passing RP down anymore. Given that no one in my family (tons of cousins, aunts, uncles) has it, and that we can't say for sure if my paternal grandmother had it, it doesn't feel very likely. My sister and niece don't have it (thank God).

Thank you for sharing your personal experiences. This means a lot to me! I wish I *didn't* know about potential vision loss during pregnancy, because knowing beforehand has been kind of a game changer. I feel like I'm grieving, I guess. I feel like a door has been shut for me. I intend to speak to people who know more about this before I say "never" to becoming pregnant, but on this side of things--where I don't have children yet--it's really scary. At the same time, I know I'd feel the same way about motherhood that you do. Why must life be so complicated??! Haha