I'm the first in my family with RP as well. I'm also bipolar, which is a double whammy.

My wife and I talked about this extensively before we had kids, and she asked me a very important question: if my parents had known they would have passed serious illness off on me, would it had been better had they not had me?

I thought about that extensively. Really wracked my brain. But I realize that despite everything, I'm a happy person with a good life. And it's messed up if someone says I shouldn't have been born.

I have 2 kids, healthy and happy. They may get RP; I never paid for genetic testing to simply satisfy my curiosity and start playing a risk/reward game when it comes to having kids. They may not.

I've had people tell me I'm irresponsible for having my own kids, why would I risk that, blah blah blah. But you know what? My kids are my whole world, and if they do develop RP, at least they'll have someone to help them through it.

Blindness isn't like Huntington's. The interesting thing is that no one seems to suggest deaf people not have kids if they can pass on congenital deafness.

I am a 42 y/o woman with Usher Syndrome/ RP and who is the only known person in my family history with it. I have remained child-free thus far for two reasons: Wondering how pregnancy would impact my vision, and whether I could pass on this condition. I did have gene testing done this year, and now know which are mutated... so providing my partner does not also have this recessive gene mutation we would have a great chance of having children who would NOT have two copies of the gene and manifest the disease. There is a chance my child could be a carrier... In any case, I’m thinking that if you and your partner could afford to both be tested for known RP mutations, that you could move forward with having biological children. Otherwise adoption is a great option. My partner and I are still considering whether to have one. My other concern is practical, in that how do I keep track of a roaming toddler with my tunnel vision? Lol

I'm a second generation retinoblastoma survivor. I knew the risks of passing my condition. I have one son. Whether we choose to pass a condition says more about our life experiences and internal attitudes about them than it does about the condition.

You say you've had a good life overall. You know where your pitfalls were. You have unique tools your children will have access to that first gens don't. The tech available is phenomenal compared to that of even ten years ago so any lil ones will have way more autonomy than we had, as well. From that perspective, I'd say you've answered your question.

IVF? A VI/blind person with that kind of money definitely has access the average sighted person doesn't. Go you! I'm certainly not in that camp.

Here's the thing. You know what RP entails. You've been there. Every other option leaves you with variables you won't even see coming into play. Will you do a genetic assay on your adoptive child? Would you accept noticeable or known future anomalies? What makes those anomalies better than RP? For IVF the questions about disposal of unused fetuses or RP pos ones is there, too.

I will also note that the US is jogging back into the past in so many ways that thinking adoption will still be an option for anyone with a disability might become a very rude awakening. This may seem alarmist but these underlying attitudes have never gone away. At the moment, they're surfacing with a vengeance.

If you can manage fruition of your decisions with as few outside help as possible, you will have a better outcome all around. This is my advice to all couples considering such decisions but for people with disabilities, it's becoming a much different world way too fast.

My blindness stems from a genetic condition called Reigers eye anomalies. My wife and I knew we wanted children; help, I wish we would’ve had more, - we have two - but my wife had very difficult pregnancies both times, and we made the decision to stop trying. We were well aware of the risk that a child I fathered May inherit my condition; however, I am a successful blind person, buy any way you can quantify that term, and we both figured that if we had a child with a visual impairment, we would be able to instill that same success in our kids. I know the whole landscape of total blindness, I’ve lived it my whole life, and while it’s an inconvenience, and a pain in the ass at times, it doesn’t rob me of my joy, and my wish to contribute to the world. We were even offered the option of doing amniocentesis, to make sure our child didn’t inherit my condition, but elected not to go this route, because even if they did, we still would have had the child, and at the time there was an unacceptable risk, in our view, of harming the fetus associated with the procedure. We rolled the dice, and one I guess, because neither one of my kids inherited my condition. My oldest has amblyopia, and nearsightedness, but his visual impairment is stable, and is correctable with glasses. My youngest son, actually has much better then normal vision. We call him Eagle I. LOL! One way to gain some perspective on your situation is to ask yourself the following question: would you adopt a blind child? For us, the answer was yes, and thus, it was a no brainer for me to try to father my own children. Blindness didn’t stop me from doing what I wanted in life, and I would be damned if it was going to stop me from having children. Now that my kids are teenagers, we are contemplateing adopting a blind child from a country that lacks the opportunities afforded to blind folks in the US.

I and my wife are both totally blind. We have a sighted child, but had the chips fallen differently I think we'd have been well qualified to bring up a successful and able blind young person.

I am lucky to have a good job, a secure home and I'm generally a happy, healthy person. My blindness makes up a large part of my working life, but I don't often feel that it negatively impacts me. Obviously there are times when I wonder how different things would have been, but the landscape of technology is changing so quickly that things blind people 20 years older than me struggled with are taken for granted in our household.

So whilst I'd never choose to blind my offspring if they could be sighted, I'd also never stop them living life to the fullest, vision or not.

Same here, Autosomal Dominant RP. I was told that I have a 50:50 chance of passing it onto my child. I've heard on the RP Facebook group from women who had been pregnant that their vision deteriorated significantly during pregnancy (something Todo with the hormones I guess, I lost about 10 degrees of my FOV when I was on the pill and stopped immediately when I realized it was affecting my sight).

For me it's easier because I've never been much interested in having children so it's pretty much a non-issue, but if I was sure did want them, I wouldn't let RP deter me - sure, life has been a bit more difficult being visually impaired and being a VI parent would have its own challenges but the kid would grow up without thinking blindness is somehow bad or limiting (because her/his parent is VI and does just fine!) so if they were to be diagnosed too, it wouldn't feel like the end of the world.

What’s RP?