Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).
- By HeathBar · New reply 5:30 pm
- 1 reply
- I'm seeing a geneticist in a few weeks and was just wondering what types of questions I should ask him. Apparently he is very knowledgeable about nf, but I don't really know what I can ask him that I ...
- By Lilyy · New reply yesterday at 6:57 pm
- 12 replies
- hi im new and i was wondering if there is anybody from toronto i can talk to about nf1 ...
- By nqpicon · New reply November 25, 2008
- 1 reply
- My little sister who is 25 years old, from Ecuador was diagnosed with Neurofibramatosis. We have seen many doctors here in my country and finally it seems that these new doctors are a little familiarized ...
- By IvyO · New reply November 24, 2008
- 4 replies
- My name is Ivy. My child was born with the cafe spots (about 30 of them) and at first I didn't think anything of them. I decided to do some research online just about having multiple birth marks (At least ...
- By Uva · Posted November 17, 2008
- 0 replies
- I would like to be informed about this topic ...
- By cyndi_s · New reply November 13, 2008
- 6 replies
- My one year old was recently assessed for NF1. The ped. neurologist has ordered an MRI and a DNA blood test. He is pretty sure that is what it is. My son has cafe au laits spots and I think two plexiform ...
- By HeathBar · New reply November 9, 2008
- 7 replies
- I was diagnosed last year with NF1. My doctor has told me that I have a plexiform neurofibroma. I guess I'm still kind of confused as to what exactly that is and why it can't be surgically removed. I ...
- By Kel928 · New reply November 6, 2008
- 13 replies
- I was diagnosed on Thursday with NF1 - at age 33. A dermatologist that I went to referred me to a pediatric neurologist who specializes in NF. He told me that I am the mildest cast he has ever seen ...
- By jonsmama · New reply November 4, 2008
- 9 replies
- Hello Everyone! We are in the process of adopting a three year old boy from Haiti who has been diagnosed with NF1. We would like to get him a medical visa so he can have an MRI, see a opthomologist and ...
- By ankit374 · New reply November 4, 2008
- 6 replies
- Thank you all for your support...Could anybody please tell me if CALs can have hair growth on them ...
- By caitandcarasmom · New reply November 4, 2008
- 1 reply
- While we haven't been formally diagnosed with NF yet...my daughter is to start genetic counseling in December and because she has the spots and some other symptoms, her neurologist thinks she may indeed ...
- By stefan1 · New reply October 29, 2008
- 13 replies
- optic glioma ...
- By 3boys · New reply October 15, 2008
- 4 replies
- I've posted here on occassion during the beggining of our journey into the NF world. At the time my youngest was the one of most concern. He has a lot of Cafe au Lait spots and was why we ended up getting ...
- By caitandcarasmom · New reply October 14, 2008
- 4 replies
- My 2 year old daughter, Cara,who has hydrocephalus, global developmental delays and a mild form of CP may have NF and we're not sure what that means and what the future holds. At a routine neurologist's ...
- By Eric321 · New reply October 7, 2008
- 8 replies
- My wife has just been told by the doctor that she has neurofibromas. She has had a cluster of about seven or eight nodules on her leg since she was a teenager--she went to at least 3 dermatologists in ...
- By HeathBar · New reply October 3, 2008
- 9 replies
- I was diagnosed with NF1 a little less than a year ago. I have no obvious external skin deformities, just a few small cafe au lait spots. Basically, I have a plexiform neurofibroma that is really really ...
- By ankit374 · New reply September 4, 2008
- 12 replies
- I am 29 years old male. Did not have any symptom of NF1. Until I began to explore about the brown spots on my body, to my shock it appears that I have NF!. I have only following two conditions i.e. freckles ...
- By cdhester · Posted August 9, 2008
- 0 replies
- CHILDREN’S TUMOR FOUNDATION FORMS NASHVILLE CHAPTER Dr. Kim Hunter-Schaedle to give update on NF research, trials The Children's Tumor Foundation (CTF), a non-profit medical foundation dedicated to improving ...
