If you are a teenager or an adult with neurofibromatosis NF1, NF2 or schwanamotosis. what are your symptoms?

Question

I have a 5 year old little girl. Neurofibromatosis runs in her father's family's side. If you have this desease or have family who do I just want to know what to expect. Chances for your children to have are 50/50 and I want to be ready and know what ways you deal with it and what to expect.

Answer 1

I am 26 and have nf1 and vonrichkenhause (not sure on the spelling on that), but my tumors didn't start to appear until I hit puberty. I have spots all over my chest (and some lumps). I will be honest, it wasn't easy for me being a kid with nf. I have a spot on my head that makes my hair a different color (black) and the rest is blode. Kids are cruel and sometimes my teachers didn't do much about it. I rarely take my shirt off when I go swimming unless I am with friends. When you get the tumors cut off, make sure the doctor is familiar with nf. If they do not get the tumor at the root, it can come back twice as big. Someone also said that if you get tumors on the outside, you won't get them on the inside (and vice versa). That's not true. I have had both. I am self conscience of my nf and find it difficult to meet someone. Make sure your daughter grows up of not seeing this as an "impairment". There can be learning problems and other side affects with nf.

I also have café-au-lait spots and scoliosis. I did have back surgery to fix the curvature of my spine. I would recommend that you do not use a rod. I have surgical hooks in my back and had five vertebrae fused inside and outside on the spine. Granted I am a little shorter (if you think of 5'9" as being short - I could of been over 6ft tall), but by fusing the vertebrae, I didn't have another surgery. The hooks stay in for life. As with a rod, you may have to have it replaced or changed as your daughter grows.


I found this website to be helpful - http://www.ctf.org/

Hope that helps.

Answer 2

When I was born, it was thought by an eye doctor and even my child doctor that I could have it. But not a whole lot was known, about it. it wasn't until I was 15 that I was told that I had it, which like the above poster said. It normally happens with puberty. I'm 23 now. But here go to this site and see if it help you out.