Do you know what Neurofibromatosis is?

Question:

if you or anyone you know has this please tell me about and please don't look it up and tell me the definition of it i have already done that i want to know the physical and mental of it from the child to the parent how to cope with it.

my son is being seen by a doctor for this please give me any info on it

Answers:
Hi,

Neurofibromatosis is also known as either NF1 or NF2. I have a family member with NF1 - We first knew about his condition when small freckles started to appear on his torso, these are known as cafe au lait spots. I have researched and read up on this as well as spoken to other people with the condition in the UK.

When he went through puberty some small lumps about the size of a UK 5p coin began to appear on his body. These soft squidgy nodules can appear anywhere on the body but can also be removed by a surgeon.

They say thay some people with NF have learning difficulties, but my cousin is very intelligent. The physical is sometimes painful lumps depending on which nerve ending they grow on and ignorance from people with no understanding of this very common condition.

If you have any specific questions you can get in contact with me and I will answer them for you, Good Luck.

Sorry, I can't help you, but the Neurofibromatosis Foundation may have a local chapter near your where you can get support and help:

http://www.nfinc.org/chapters.shtml

I wish you the best of luck.

Neurofibromatosis is an autosomal dominant genetic disorder. It encompasses a set of distinct genetic disorders that cause tumors to grow along types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. The tumors can grow anywhere on or in the body.

So basically, theres a gene missing, meaning he can get a tumor anywhere on his body.
Please elaborate on the "want to know the physical and mental of it from the child to the parent how to cope with it.
"

Sorry, hope this helped at least a bit.

So...you have looked up the definition and researched it a little, I assume. Plus your son is suffering from it and is being treated by a doctor, and you still have no idea what it is? Yahoo! Questions is not the best place for this....why don't you try actually asking the doctor.

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Do you know what Neurofibromatosis is?

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