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HI. My granddaughter has NF and I’m trying to find as much as possible info about it. I’ve tried looking for the chromosomal condition neurofibromatosis but found nothing. Is there anybody here who could tell me if there is any reliable website where I could find info I need?

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Well, I know that neurofibromatosis is an inherited condition and it occurs in 1 out of 2,500 births. This condition causes benign growths on peripheral nerves and pigmented patches on skin but only the growths present problems. They can even lead to pressure on a nerve situated in an awkward anatomical location, such as a nerve root emerging from the spine. In turn this can cause discomfort or problems with the function in a nerve. Diagnosis can be confirmed by biopsy of a lump and I'm not aware of any specific preventive treatment but I know that neurofibromas can be removed if they are troublesome. As for the sites, I don’t know any but I will try to find some.
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I know this was originally posted over a year ago but here is the information I have. I have NF

NF is an autosomal dominant disorder. Autosomal means it is on the autosome chromosome which is the same in both males and females (so boys and girls get NF equally often) dominant means that you only need one copy of the affected gene to get NF.

Although NF is inhereted not all cases are. Half the cases are inhereted while the other half are spontanious mutation meaning that the affected individuals parents did not have NF.

There are two major types of NF (I recently heard that there may be more very minor types).

There is NF type 1 which is much more common (1 in every 4,000 births)
There is also NF type 2 which is much less common (1 in every 40,000 births)

Some effects of NF one (i know alot more about this type because it is the one i have) are:

Tumors (usually non-cancerous)
Cafe-au-lait spots (like birth marks)
Short stature
a large head
scoliosis
learning disorders
problems with the bones of the legs
high blood pressure
early or delayed puberty


There is a lot more to NF then i described here

There is a foundation that deals with teaching about NF it is called the children's tumor foundation

the website is www.ctf.org
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