Newly diagnosed with NF1

Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).


New Bumps..???

  • By happynvchick84 · Posted 1:17 am
  • 0 replies
  • I just turned 30 and am newly diagnosed with NF1. Mostly I've had Cals and only about 4 bumps my entire life. Recently, it seems like new ones are popping up, mostly on my trunk. Does anyone know if stress ...

Any advise will be gratefully received

  • By Mum23boys · New reply 12:40 am
  • 15 replies
  • Or NF2 not even sure yet ..... Hello everyone, I have a brother who at 38 years old has just been Dx with NF. This is still very new, I don't even know if it is NF1 or 2. He is in severe pain with tumors ...

Just diagnosed as an adult

  • By shankomatic · New reply April 16, 2014
  • 14 replies
  • I am a 43 old adult male that just recently found out that I have NF1. I had several café spots as a child and the doctors passed them off as birth marks. I had some learning problems as a child but nothing ...

Full Gene Deletion

  • By Kinleysmom · New reply April 16, 2014
  • 1 reply
  • Hello All! My two-year-old daughter was diagnosed with NF1 this past fall; her genetic test revealed a full gene deletion of the NF gene. I understand this means she may have a harder go of it, she already ...

not sure what to do???

  • By CharlotteRey · New reply April 12, 2014
  • 7 replies
  • Im not really sure what to do!! Right now my nf is causing me so much pain and sleepless nights!! I love love love my job so much but this problem is making me miss a lot of work!! I feel bad for my co ...


  • By RobertRowan · New reply April 8, 2014
  • 14 replies
  • Hi I have nf1 and I have started jerk (jump) in my sleep sometimes it is my whole body and sometimes it's just The one arm does anyone else. Have this and how can i stop it ...

Skin colored bumps all over stomach

  • By happynvchick84 · New reply April 2, 2014
  • 8 replies
  • I recently went to the dermatologist to have these bumps looked at that are all over my stomach.. they look like bug bites but they dont itch..and they come and go and also don't grow. I have multiple ...

NF organization based in Austin, Texas

  • By AngelCare · Posted March 29, 2014
  • 0 replies
  • AngelCare Foundation for NF is dedicated to providing financial assistance to help NF patients with medical bills that insurance does not cover. I started AngelCare Foundation for NF with money from my ...

lisch nodules

  • By mishmash001 · New reply March 10, 2014
  • 5 replies
  • Hi everyone. My little boys MRI scan is clear. He has 8 CALs and went to opthamologists which informed us he has about 15 lisch nodules but then said he wasnt 100% that they were them and would see him ...


  • By Ruucsandra · New reply March 9, 2014
  • 8 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 ...

need help understanding neurofibroma

  • By brandymc · New reply March 6, 2014
  • 5 replies
  • Honestly not sure which one I have. The physicians locally missed the tumor for years and when they did biopsy it came back as a neurofibroma that was not malignant, but they told me there were not different ...

new here... not sure what to do

  • By okay123 · New reply March 4, 2014
  • 9 replies
  • I have not been "diagnosed" with NF, but both my mom and sister have. I am in my mid-30s. I have 5 CALS, I think I have 1-2 neurofibromas, but both derms said they were moles - this was prior to me knowing ...

Mayo clinic visit with severe itching

  • By kevlee67 · New reply March 3, 2014
  • 7 replies
  • I just returned from mayo clinic in rochester. I was not real impressed with the nf dr, she finally asked me why I was there to see her even. I say to stop my itching. She say as severe as your condition ...


  • By Lauraxox · New reply February 24, 2014
  • 1 reply
  • Hi I'm new to all of this I haven't known that Long I was diagnosed with nf1 last summer,what is this site all about ...


  • By Lauraxox · New reply February 24, 2014
  • 5 replies
  • Hello the names Laura I was diagnosed with nf1 early last summer, it was horrific I've never had problems through out my life and I'm 22 this year can anybody tell me more on the condition ...

Help me

  • By vicky_vishal · New reply February 19, 2014
  • 8 replies
  • i am suffering , and i don't know its nf1 or nf2, my family wants a cure it from homeopathy and after taking a long time in homeopathy medicine it increases from 6 to 32. i need cure , i don't believe ...


  • By Doug0004 · New reply February 13, 2014
  • 5 replies
  • Grandson recently diagnosed, What is in his future? Where is the best Doctor/s? He is five years old and looking at loosing his eyeball ...

1 year old baby newly diagnosed with NF1

  • By babyshahnaz · New reply February 12, 2014
  • 1 reply
  • my daughter was diagnosed with NF1, large CAL patch on back n numerous patches all over body. strawberry red patch on right hand. large head, slow growth but she is an active vibrant child. read numerous ...

Insurance Appeal

  • By DinoJack · New reply February 5, 2014
  • 2 replies
  • Hello Inspire! I have a potential insurance concern that I want to address in hopes that someone else has been through this before and has any experience or advice to offer. We are seeing a geneticist ...

New to this

  • By Machain · New reply February 3, 2014
  • 11 replies
  • Last year I was diagnosed with NF1, I have tumors in every level of my cervical spine. My doctor was able to remove 5 of them with 2 surgeries, a 22 hr & 14 hr long surgeries. I don't take any pills or ...

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