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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im 20 and have known that i have nf for a few years, but my parents have known since i was a few months old. i used to go to the doctor every year, but havent been since i was around 12. because i have never really been impacted by nf i really didnt know anything about it until now. i still cant really wrap my head around it - which is why i scheduled an appointment with an nf specialist near me, but until then i just have a few questions that have been eating away at me.
i have 2 small bumps on my head, under my hair, but nothing else. i have no clue what to expect in the future...does it get worse as you get older? what are the tumors really like? i am devastated by the fact that having kids is now this huge decision-when i always thought it was a given...if mine isnt bad, can i have a child whos is or do i pass the same degree of it? ...if someone could give me a synopsis of what its really like to have nf...that would be great...especially because i have to decide somewhere down the line if its something i am willing to risk giving to a child and want to get myself comfortable with that. thanks! Posted on 07/31/09, 09:07 am |
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I don't have NF, but my husband does. His NF is usually just cosmetic...some cause pain but he's removed them & everything's fine. He has gotten more bumps in the 10+ years I've been with him, but from all that I've read every case is different.
Many people seem to experience more bumps over time or with increased hormone levels (pregnancy), but the # of bumps/cafe spots vary with each person. Some people seem relatively mild while I have read some serious medical problems with others. I suspect my 5 year old has it too, but I have an 8 year old who we believe is in the clear. Children would have a 50/50 chance of getting NF from you. Sometimes I feel guilty that I braved my chances twice when my first child didn't have it. What's done is done & she is the light of our lives, so no regrets. You have to remember that every pregnancy is a risk. Though many with NF say it is miserable to live with...your child could have a multitude of health problems from 2 healthy parents. At least my child is able to walk, talk, & enjoy life. I'm a teacher & I'm all too familiar with children who can't communicate, walk, or suffer from autism. Even though I worry everyday about my daughter I consider her a blessing & couldn't imagine my life without her. There is a selective invitro process I've read about that can test for NF before they implant the eggs. Don't let anyone influence your decision to have children...they will have you as a role model & to discuss their problems with. Lastly NF cases vary, so if you have a mild case that doesn't mean your children will also have a mild case. There NF would be milder or much worse than yours. Good luck with your appointment. 
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