What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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do most people have neurofibromas
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hey- i recently have written on the discussion about whether or not to have children. i have NF, but thankfully dont have any neurofibromas- because i dont know how difficult life can REALLY be with NF, im afraid i will choose to have my own kids and they will have horrible symptoms. not sure if thats a chance im willing to take- even if theirs isnt bad i dont want to put them in the position i am, wondering if their CHILD could have a bad case.
SO, that being said- i was just wondering- does anyone know if their are more people with NF like mine...or am i one of the lucky ones? (cause right now it seems that way, but maybe doctors suspect that there are a lot of people out there who dont know that have it) Posted on 08/18/09, 03:08 pm |
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My Tumors did not start to really appear until I turned 32. At the moment its not too bad but I am getting more as I get older.
Only you and your partner can make the choice about having children, there is help out there for this. 
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my nf is very mild a lot of bumps but not really noticeable
nothing has impeded me from doing anything in life so i guess i am a luck one too... i decided to have a child and he too has nf that seems to be mild but things can change and that is what i worry about for me and him. no one is given a promise on life nf or not.
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Well said Igloogirl. I had a couple when I was a teen, but I got a lot more after I started having children. I don't know if I would have started to get more if I hadn't had children. Two of my kids have it and two do not. The two that have it have not had any major problems. My son does have a learning disability and they both have the cafe spots. My youngest child does not have NF, but was born with a cleft palate. We are still paying on her dental work because of that. So you just never know.
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Everyones symptoms are different. Some can have a few on the outside, but more on the inside of the body. Tumors can continue to grow throughout life. So it is't easy to say.
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my "bumps" started when I was about 12-13 I am now 36...I have an 11 year old son, as to whom seem to be clear of having NF. Now there are other issues that you need to be concerned with as well. Of which I have a question...
My son was diagnosed with aspergers syndrom (mild form of autisim)... I was curious as to how many other parents have children with autisim...I was told, and read that my NF could be a factor as to why he has it
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hi mine is very mild aswell, i only have few tumours on my back and 4 on my chest, but have only noticed the ones on my back this year and am 30 now, didnt get diaganosed til i was 20, I also am worried about having children encase i pass on horrible symptoms to them but i have always wanted to ahve a family
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I am 56 and my tumors are all inside and have a few outside as well .. I do not have children but that is because i am single and never did adopt or anything.I found out about my NF when I was 49 so that never even was a reason for me.As for the person and autism, I have a friend whose daughter also with NF is autistic. She is doing remarkably well at this time but that is with thwerapy and special classes and stuff..She has bad times and my friend actually has to vacuum when she is in school for the noise... Have no idea if NF is a reason but there are 3 or 4 parents in Support Group that do have autism in some form...
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I have one child with ADHD who does not have NF, and one child with LD who does and one child with ADHD who does have NF and one child born with cleft palate who does not. So I think really any of it is a crap shoot. And I'm not sure it matters. You just deal with issues as they come up with kids for any reasons.
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