Neurofibromatosis Type 1 or 2

[ChazII]

Anyone else have NF?

[libodem]

1. what is it

I'm unfamiliar with that disease.

[ChazII]

2. NF for short

Neurofibromatosis is a genetic disorder. We prefer the term disorder to disease. NF1 is a result of a mutation in chromosome 17 while NF2 is a mutation in chromosome 22. NF1 affects 1 in 3,000 births and I will have to check the stats for NF2.

As its name implies it deals with the growth of tumors along the nerves.

Children's Tumor Foundation or ctf.org is a great site to begin learning. Thank you for asking.

[kiranon]

3. My dtr has NF1.

My adopted dtr has NF1. She was diagnosed at 2 months and is now 11. Rarely see anyone with NF1 or 2 unless we go to a conference.

[ChazII]

4. Let's hear it for the DoD and congress - they did this right

Great news!! Congress approved 12.8 million for the Neurofibromatosis Research Program (NFRP) for fiscal 2012. This funding is supported through the Department of defense Congressionally Directed Medical Research Program.

[ohheckyeah]

5. My niece has it but I don't remember which type.

She just had very major surgery, 10 days of traction, and more surgery to straighten her very messed up back. She looks like a different person now that she has a straight back!

[ChazII]

6. NF1 is the more common.

It affects 1 in every 3,000 births. NF2 has small tumors growing along the auditory canal and is the more serious of the two types. It can also mess with the individuals sense of balance.

It is wonderful to read that your niece's surgery was successful. People with NF can have many surgeries in their life time depending on how severe their NF is. Some go through life with little or no problems. Luckily, CTF (Children's Tumor Foundation) has received grants from the Dept. of Defense for medical research.

[ohheckyeah]

7. Thanks -

She has the NF2 then because she has some small tumors.

The scoliosis was awful. Her left hip was rotated up and to the back to the point she couldn't wear a skirt and she had a hump on the upper part of her back like a dowager's hump. 19 years old and her stay in the hospital was horrendous. The 10 days in traction was worse than the 2 surgeries.