Neurofibromatosis type 1 (NF1)
Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).
- By Ruucsandra
· New reply March 6, 2014
- 6 replies
- Hi there I am 24 years old and live in Uk since 2009. I have been diagnosed with NF1 just now and my son also- he will be 2 in may. My dad and uncles have the spots but never been to a doctor to see if ...
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
- By Francesc
· New reply 12:11 pm
- 9 replies
- What is the meaning of life ...
Information and support for parents of children with neurofibromatosis type 1 (NF1).
- By trink1
· New reply 5:55 pm
- 2 replies
- Has any one tried CBD hemp oil to treat Nf 1? I am Looking into it and just want to know what results ppl have had ! Please do not judge me thanks ...
Find information and support here if you have neurofibromatosis type 1 (NF1) and are pregnant or thinking about having children.
- By xciiimaria
· New reply 9:17 am
- 4 replies
- I was wondering what is the effect of pregnancy of an NF type 1 patient? I know that there is 50% chance that the baby might get the effected genes. But I don't know how the pregnancy will effect the ...
Neurofibromatosis type 2 (NF2)
Information and support for anyone recently diagnosed with neurofibromatosis type 2 (NF2).
- By tinabean925
· New reply January 17, 2014
- 8 replies
- I am terrified. My son had a cat scan for a possible head injury and they found tumors all over him. He has to go for another MRI bc they didn't get the whole spine and can see some tumors at the top ...
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).
- By Kalgoorlie1973
· New reply yesterday at 2:41 am
- 6 replies
- Can anyone recommend medication to stop nerve pain in leg?get it 24/7 mainly around shin and ankle area ...
Information and support for parents of children with neurofibromatosis type 2 (NF2).
- By GoodByeNf (Inactive)
· New reply February 26, 2014
- 41 replies
- Hi my name is Susie. I am a mother of four children. I have a very long history of this disease. My grandfather had brain tumors and passed in his late twenty's. My mother was 36 and died as well my aunt ...
Find information and support here if you have neurofibromatosis type 2 (NF2) and are pregnant or thinking about having children.
- By stephdev84
· New reply September 4, 2013
- 10 replies
- I was diagnosed with NF 2 when I was 6 years old I just found out that I am pregnant I was told that I have a 50 50 percent chance I'm passing this disease to my children then I was told that there is ...
Share your story, find support and information, and discuss symptoms and management of schwannomatosis.
- By kala
· New reply March 3, 2014
- 13 replies
- It seems that there might be new hope yet for treatment for schwannomatosis . Have anyone read this report http://www.uab.edu/news/latest/item/4014 -changes-in-gene-explain-more-of-inherit ed-risk-for-rare-disease ...
For parents, campers and counselors and counselors-in-training to connect and keep in touch.
- By AmbieBambie
· New reply July 12, 2013
- 4 replies
- Just wondering if anyone on this site is in the toronto area looking for a friend with nf? if so Id love you meet you ...
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
- By NF_Network
· Posted yesterday at 3:57 pm
- 0 replies
- Memphis, TN - Ask the Doctor Meeting is open now so please pre-register! http://www.planetreg.com/E21113229176366 - Registration is Free - Adults ONLY please - childcare will not be available - Includes ...
Share stories, laughter and anything else you'd like to in this open topic.
- By Miss-No-Name
· New reply 6:11 pm
- 6675 replies
- GAME RULES: *One person posts a song *Then the next person takes a WORD from that song & adds another song which contains that same word. example.. "Don't STOP believing" Journey (next person) "STOP In ...
Have a question about using the site? An idea for making it better? Post here and let us know how we can help.
- By LONELY5
· New reply yesterday at 4:11 pm
- 6 replies
- Does anyone know the best doctor to go to in Erie Pennsylvania I have yet to find one & really need one thanks ...