Newly diagnosed with NF1

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

Discussions

When to worry about NF possibility?

elliottsmama
  • By elliottsmama · New reply April 23, 2014
  • 23 replies
  • I really don't know which forum to put this in. I hope I chose the right one. In my googling searches, this forum came up a lot so I'm hoping to get some reassurance. My son is almost 3. He had a large ...

Please - we need urgent help

Mum23boys
  • By Mum23boys · New reply April 21, 2014
  • 7 replies
  • Hello, I have posted before about my brother and had some very kind replies. We are now in extreme need of help. I am scared that my brother is losing the will to live and I do not think that he is getting ...

Where is financial assistance needed for NF patients and their families?

Nfa4c
  • By Nfa4c · New reply April 21, 2014
  • 8 replies
  • I am launching a campaign to bring awareness to NF and the financial hardships patients endure treating this disease. Please share your input on where funds are needed the most to help diagnose, treat ...

Any advise will be gratefully received

Mum23boys
  • By Mum23boys · New reply April 20, 2014
  • 19 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 ...

not sure what to do???

CharlotteRey
  • By CharlotteRey · New reply April 18, 2014
  • 8 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 ...

New Bumps..???

happynvchick84
  • By happynvchick84 · New reply April 18, 2014
  • 2 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 ...

Just diagnosed as an adult

shankomatic
  • 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

Kinleysmom
  • 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 ...

Nf1

RobertRowan
  • 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

happynvchick84
  • 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

AngelCare
  • 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

mishmash001
  • 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 ...

NF1 & PGD - PLEASE HELP

Ruucsandra
  • 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

brandymc
  • 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

okay123
  • 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

kevlee67
  • 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 ...

Xx

Lauraxox
  • 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 ...

Laura

Lauraxox
  • 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

vicky_vishal
  • 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 ...

Help

Doug0004
  • 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 ...

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