Help desk

Have a question about using the site? An idea for making it better? Post here and let us know how we can help.


Can someone not get any bumps from having NF

  • By tay6973 · New reply April 20, 2014
  • 17 replies
  • is there any way that someone cant get as much bumps as people usually have ? Im 20 & i only have 2 very small bumps on my body; one on my left leg and another on my lower back. I have freckles all over ...


  • By sheriemay · New reply March 11, 2014
  • 3 replies
  • Hello friends, i'm new here.. I'm Sheriemay Aguhob; 33yrs.old; from Manila, Philippines.. i have NF .. now i have a question to ask,, a person with NF can still work aboard? i haven't been to a doctor ...


  • By LONELY5 · New reply March 7, 2014
  • 6 replies
  • Does anyone know the best doctor to go to in Erie Pennsylvania I have yet to find one & really need one thanks ...

disability how do i go about it

  • By collesong · New reply February 27, 2014
  • 18 replies
  • how do i sign up for disability? no one will give me the proper papers, they tell me my husband makes too much money i had a lawyer a year ago, when he submitted my health problems i was turned down and ...


  • By LONELY5 · New reply January 29, 2014
  • 4 replies
  • I have NEVER seen a doctor for my NF, what kind of doctor to I go to? I've been told endrconologist & nerologist can someone help me please ...

Chemo and NF

  • By ladytazz · New reply January 21, 2014
  • 6 replies
  • On Dec 31 2013 I had a mastectomy be cause of Invasive Ductal Carcinoma III. I will soon have chemo ,. Does any know how chemo affects N F ...

Please help!

  • By Krowe9290 · Posted December 8, 2013
  • 0 replies
  • There's something wrong with my account I'm logged in on my phone but it won't let me sign in from a computer I tried resetting my password and it doesn't recognize it I know I am entering everything ...


  • By Kittyhorse · New reply November 30, 2013
  • 3 replies
  • Hello Everyone - I am a new member. I am not diagnosed with NF, however I have had many symptoms particularly over the past three years. Recently as last Saturday 24/11/2013 (Queensland, Australia) my ...

Wondering if I could get some advice on rare McCune Albright Syndrome??

  • By Gemini13 · Posted November 7, 2013
  • 0 replies
  • I am believed to have McCune Albright Syndrome and not NF. Wondering if you handle support for rare McCune Albright? Definitely I do not have NF. I do have Café Au Lait Spots. Biopsy proved that they ...

whats happening

  • By jmorrg · New reply October 10, 2013
  • 1 reply
  • I have had nf1 I guess since birth, but was know till my 3rd child was born. now we know that all of us have it me and my 3 children. I have what was thought was a birth mark on the nape of my neck. and ...

Neurofibromatosis removed

  • By BetsyPR · New reply September 20, 2013
  • 3 replies
  • My sister has neurofibromatosis and just got a few of them removed and now she is feeling like if her skin is streching I would like to know if someone knows if what she is feeling is normal ...

No job and still going wrong

  • By wrb_79 · New reply August 14, 2013
  • 21 replies
  • Is it me or is God thrown a brick at me and started laughiung ...

carcinoid tumor and nf

  • By geffro · New reply August 6, 2013
  • 2 replies
  • Are carcinoid tumors related to nf ...

carsinoid tumor and nf

  • By geffro · Posted August 6, 2013
  • 0 replies
  • Are carsinoid tumors related to nf ...

undiagnosed and confused

  • By Jwalla · New reply July 20, 2013
  • 3 replies
  • My daughter Mackenzie is 10 and has over 20 Cafe-Au-Lait spots over her stomach, back and thighs, 3 are large. She has seen a Neurologist and recently had an MRI of the brain and Spine as well as an Ultrasound ...

info required

  • By sivam85 · New reply June 19, 2013
  • 11 replies
  • i know for sure i have nf but dont know what type 1 or 2 , however i would like to know if there is anyway of controlling further growth such as healthy eating, alcohol and tobacco consumption does it ...

please help

  • By 36asha · New reply June 7, 2013
  • 1 reply
  • hi all, my name is asha and i desperately needs some help. my 15yr old daughter with nf1 has a tumor in the left carvernous nerve that is growing. we live in trinidad and doctors here advised us that ...

Interval Between Surgeries Under General Anesthesia?

  • By Michelle519 · New reply May 16, 2013
  • 4 replies
  • Okay so I have a question regarding general anesthesia.... I (hopefully) have a surgery planed for June 26... I just found out it is very possible for me to get a second and different surgery on June ...

Nf1 nf2

  • By truckerboy89 · New reply May 10, 2013
  • 8 replies
  • Is Nf1 worse than Nf2? can some please tell me ...

Partially empty sella turcica

  • By vivianytell · Posted March 28, 2013
  • 0 replies
  • just had a mri ...

Things you can do

Support the Neurofibromatosis Network

Help the Neurofibromatosis Network reach its goals and support people like yourself by making a donation today.

Donate to the Neurofibromatosis Network

Discussion topics

Beauty Mark Nation

Beauty Mark Network

Resources from NF Network

Find an NF Walk Near You

Find an NF Walk Near You

Community leaders