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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Is this a fibroma? Could my sis have NF?
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I'm going to put some photos in the my photos section my main concern is neurofibromatosis, because the best name I can come up with for what are on my teenage sister's back are fibromas, and also because raynaud's runs in my family, and she doesn't have 6 cafe au lait spots that are at least 5mm, she does have one HUGEish one, I'm talking heart shaped if it were a rectangle it would be 8 by 7 mm, and since its on her back, when she bends over its even bigger, plus she has probably 5 1 mm or smaller ones, and maybe 2 or 3 that are 2-3 mm. Also, she has this weird thing on the back of her neck under her hair, i thought it was a rash but my mom said oh i forgot about that, she's had that since birth. Its like a ton of red splotches, i will attach a picture but I'm not sure if its visible, I'm having camera issue, by the way the two fibromas? are maybe a mm together. I'll also attach a pic of the heart on her back, but its hard to see.
I'm wondering whether I should be worried about NF. I don't know if the cafe au lait spots and raynauds mean anything as they run in the family (I have them too) but the things on her feet worry me. Thanks in advance for any advice. Posted on 11/09/08, 11:11 pm |
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I looked at your pictures. It is hard to tell from a photograph. I would definately see a doctor. Go to the CTF website and find a doc in your area who knows about NF. Don't just go to any dumbass doc. The ones who think they know something are even more dangerous than the ones who say, "neurofibromawhat?" God bless you and good luck. 
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Thanks so much for the response, whatever it was its all but gone now, how weird is that? It now looks like a scar that has healed about 85% of the way. So I'm not nearly as concerned as I was, but I'm having her keep her eye out for anything else like that, I'm also going to have her birthmark checked out, though she says she doesn't want it removed because its heart shaped and she likes it lol.
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I believe the thing on her neck is just a salmon patch. This is an incredibly common birthmark that is not NF related. You might want to have a geneticist look her over if she has more than three CALS.
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are you kidding me....your tripping about that....I would give anything if mines looked like that.....
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