--- In neurofibromatosis2@yahoogroups.com, blueberry_girl14224
<no_reply@y...> wrote:
> If they already know that she has NF how do they know it is NF2?
> Usually nf2 doesnt show up until much later in life(late teens
early
> 20's). NF1 is usually the one that shows up in childhood. Are the
> doctors sure of her diagnosis?? Check out the National NF website,
> Its very helpfull. I believe the address is: www.nf.org
>
> Hope this helps some.
>
>
>
> K.M.

Her 22 chromsone is mutated she also has lost 70% of her vision, and
has had surgery to remove blastomia cancer from spine and her
stomache and her right kindney. i'm a member on the nf website. it
just didn't give me how long children with nf2 live. her doctor gave
us 12 to 16 i was looking for longer time :)