Retinitis Pigmentosa Support Group

Hi to all you lovely people around here. I have been reading posts on this forum for the past 2 days and finally joined today. My bf has been diagnosed with RP last week. He is 27 yr old, who has had night blindness since he was a kid. But got diagnosed recently when he was diagnosed of a cataract also. The thing is he never realized he had vision problems except night blindness all throughout and is still not bad at night vision, day vision is pretty good.

He now talks of breaking up with me, and says he doesnt wish to ruin my life. I am very sure of marrying him only, and have no issues becoming his support system. But I have 1 big doubt...can he have kids with RP? cz they also stand a chance of inheriting the same problem. He has no history of RP in his family and I also dont have RP.

Welcome to this platform.There are various types of mutations responsible for RP.You can cheack out the artical section here so you will have idea about inheritance. You both can have a genetic councilling in this regards from genetician.For his catract ,if your doc advice surgery, do it . At advancing stage of Rp it may become somewhat complicated.In your case ,your child may not have RP or probability of one out of 4 and genetician can clear it more after some tests.

I can understand your BF not wanting to 'burden' you with his possibility of blindness. I think most of us feel like we hold our spouses/significant others back one time or other. But love seems to overcome that and with a supportive partner as you sound like you would be by his side, he should just take it and rejoice in the fact that the woman he loves, loves him just the way he is. As far as children -- hard question but lots of times when you're the only one in the family that has RP, it's recessive which means both parents have to have the mutation and to pass it down, you would also have to have that mutation. Like ssb said, it's complicated but regardless, I wouldn't have missed the opportunity to have and raise my children for any fear of maybe, possibly, could happen, chance of passing it down. Some people feel totally different but the joys of children/family far outweigh the risk. (Neither of my kids got RP). Now, if I had a dominant variety of RP where everyone before me had RP, I might think differently, who knows.

At any rate, welcome to this group -- glad you decided to post something. Tell your BF to come join us sometime and benefit from all the support we've all gotten from each other here. RP is definitely not the end of the world.

hey thnks a lot ssb and sharon. Trust me sharon you give me a lot of positivity. But my bf is trying to ignore the reality. I have asked him to visit a retina specialist for conformation. Though all the symptoms are the same as of RP, and his eye specialist also says so, but you never know. He says since there is no cure for this and for now I am not having big problems with my vision, I want to continue without instilling more fear, to which i dont agree at all. He says cataract surgery will improve his vision. Maybe he is too scared to visit a retina specialist. How do I convince him? Also, does one become legally blind by the age of 40 and unfit to continue with your profession?, as the web world has been guiding me.

Hi. Well, considering your BF just found out he has this disease a week or so ago, it's pretty natural to want to just ignore it, pretend it doesn't exist, not want to do anything about it 'since there's no cure anyway.' All perfectly normal. Some of us stay in denial for y-e-a-r-s -- others embrace it right off - everyone is different. I think it'd be beneficial for him to go get an ERG at a research foundation or retina specialist. That is a defining test that it is, indeed, RP. But, if your BF is resisting, maybe he just needs some time to absorb all of this. First reactions can definitely involve pushing people away, blocking it out and/or just not wanting to approach it at all so he can enjoy the sight he still has. Fact of the matter is, some fear is caused from NOT knowing exactly what you're working with, if that makes sense.

Best thing you can do for him right now is just be supportive, non-nagging, and realize he is just still absorbing it all. You ask if one becomes legally blind by 40? Well, it differs so much from person to person. Many people ARE legally blind by 40 but at 20 degrees (legally blind stage), there's still soooo much that he can do. I raised my kids, did all the parent stuff, worked, etc. etc. and was at 20 degrees for years and years. Didn't use a cane -- didn't even realize I was legally blind. So, unless your BF is a pilot or brain surgeon or race car driver -- he should be able to perform his job for a long time with assistive technology. Who knows..... there might even be a cure before he even gets to that stage. The reason I personally want to keep going to the research foundations is so they have my case and all my information and if a clincial trial or even a cure were to come around, they'd be able to reach me.

Anyway, good luck but remember that he's still trying to absorb this information. It just may take some time.

Hey there! I'm 25 (almost 26) , so about your bf's age and is known I've had RP since I was 14. I also have cataracts, and I'm already down to 10-15 degrees, but I'm a middle school science teacher with no plans of an early retirement . I second pretty much everything Sharon has said. Additionally, if your bf is

Whoops, posting on an iPhone . As I was saying, if he's planning on getting his cataracts removed, he should definitely get the RP diagnosis confirmed first through ERG and make sure he goes to both a retinal specialist and a cataract surgeon that are very knowledgeable about RP because we can have different needs than regular cataract patients. For example, we are at a higher risk of macular edema post-surgery, but this risk is reduced with certain intraocular implants. Additionally, because many of us are photophobic, it's important to get a lens implant that doesn't result in extra glare.

Sharon, you are one strong lady. You not only work towards your family, but also think about others with RP. Hats off to you, for its people like you that contribute in a big way to the research. May god bless with good health and all the love of your family. I have convinced him to go for ERG test, and also go for a 2nd opinion with a retina specialist. He just had his cataract surgery few days back. Hoping for the best! Will get back to you when I have any doubts, your replies calm me down. Thanks again

hfoster...thanks a lot for the details lady,, he just had his cataract surgery 3-4 days back..too late for us to ask these questions from the doctor..anyways..will ask my bf to verify these things with the doc on his next visit. though the doctor says he has put the best possible lens, taking into consideration he has RP...lets c...

Well if his doctor already thought he had RP, then I would Imagine he should do quite well, even if his ERG comes out normal, since that just means his surgeon was probably extra careful . Keep us updated on his progress; I go in for my own cataract consult in a couple of weeks.