
Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
There are things they tell you to watch for like the bumps, extra spots, and anything that concerns you.
I have had nf1 all my life and really have not seen any doctors for years because i have no issues.
Again some information about nf can be scary, and most of it is very rare.
Neurofibromas: She has 1 and I think she may be getting another little one.
We see Dr. Bauer once a year. We have had 2 MRIs just to check for internal tumors-no internal tumors. Shannon is showing slight curvature of the spine, but we were told not to be too concerned as it is very minor.
Shannon also has ADD inactive (not able to stay focused hard time understanding). She has been on medication for a couple of years and it has helped her tremendously. Ironically, my younger son, who does not have NF does have ADHD (he is on the same medication as Shannon and it helps him be himself. He does great in school, has an easy time making friends). Without it, oh boy!
Anyway, go to your counseling armed with questions. The only dumb question is the one that is never asked.