• By Artie_Dee · Posted 11:04 am
  • In News, research and advocacy · 2 replies
  • I was asked by other members of our group to see if I could find out the status of the clinical trial. After doing some research on my own and contact New York University Medical Center's comprehensive ...

Bumps removal question

  • By kosman · Posted 10:37 am
  • In Living with NF1 · 2 replies
  • Hi. I've known I've had NF1 since I was a boy. Had the CALs and mild scoliosis which never needed treatment. Didn't get any tumors, bumps, lumps. NF1 didnt affect me at all, until now. I am now 33. Recently ...

liver Bicpy next week

  • By Shawn75 · Posted 5:01 am
  • In Living with NF1 · 0 replies
  • I seen youtube videos on it ,,, Had a MRI last week was clear an few month ago hat TC scan of liver cause my Alkaline phosphatase where over 250 besides that it was fine no signs of neurofibromas spleen ...

Can someone not get any bumps from having NF

  • By tay6973 · Posted yesterday at 9:32 pm
  • In Help desk · 8 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 ...

After Treatment

  • By summer09 · Posted yesterday at 6:26 pm
  • In Living with NF1 · 1 reply
  • I hope I can get some advice from people who have had electrodisection or such surgery. I had treatment on my face, all over my cheeks and neck. It looks pretty intense. I was told by the doctor to wash ...

optic nerve retina coloboma

  • By Kivalina · Posted yesterday at 1:40 pm
  • In NF1 and children · 2 replies
  • My 4 month old grandson just see eye doctor and he has this optic nerve retina coloboma ,Is it liked with NF? His Mother and Brother and Grandma (Me) all have NF ...

Black spots in tumors

  • By Kivalina · Posted yesterday at 12:21 pm
  • In Living with NF1 · 4 replies
  • I had a few tumors start itching badly last night,Scratched them and noticed hard black things in them,they sometimes come out if pinched and its like a rock.What could this be ...


  • By kerinkerry · Posted yesterday at 11:59 am
  • In Off-Topic · 10 replies
  • I like all the song games and word games and I'm a big fan of wheel of fortune. I thought it would be fun to play a before and after game such as 1st person would say : tv stand 2nd person : up straight ...

I have a question

  • By cindeezie · Posted yesterday at 2:30 am
  • In NF1 and pregnancy · 3 replies
  • Would taking prenatal vitamins affect a woman with nf1 ...

Bad start to spring break

  • By Almkallas · Posted April 15, 2014
  • In NF1 and children · 4 replies
  • My daughter has Pseudarthrosis she is 7 years old and she first broke her leg at 4 mos. She has had several surgeries to place and replace rods. But, since 2010 she has been surgery free, She has had ...


  • By joeyblue42 · Posted April 15, 2014
  • In Living with NF1 · 0 replies
  • Meeting new people is really difficult. Even with warm heart, clever, extremely funny , and great humor. People totally do a 180 when they discover you have nf stipulating, oh? Your not my type. Lmfao ...

Just diagnosed as an adult

  • By shankomatic · Posted April 15, 2014
  • In Newly diagnosed with NF1 · 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 ...

Birth Control Pills

  • By Carol08 · Posted April 15, 2014
  • In Off-Topic · 11 replies
  • Is it dangerous to take birth control pills if I have NF? I have my doubts.. Thank You ...

Still looking

  • By Birdie2 · Posted April 15, 2014
  • In Living with NF1 · 2 replies
  • Hi I'm still looking for my dad! He be in his sixties by now! I'm now 45 years old and been looking for him for over 25 years! Think his name is peter and may have the surname jones x ...

Ft. Lauderdale, FL Great Steps Walk 4 NF - T-Shirt Deadline this Friday!!!

  • By NF_Network · Posted April 15, 2014
  • In News, research and advocacy · 0 replies
  • Ft. Lauderdale, FL - T-shirt Deadline THIS FRIDAY (4/18/14)! Be sure to register to now to be guaranteed a t-shirt! Click here http://www.nfnetwork.org/nf-happenings/g reat-steps/florida-ft-lauderdale ...

Boardman, OH Great Steps Walk 4 NF - THIS SATURDAY!!!

  • By NF_Network · Posted April 15, 2014
  • In News, research and advocacy · 0 replies
  • OHIO - Great Steps Walk 4 NF (AND Easter Egg Hunt!!!) THIS SATURDAY!!!! 2nd Annual Great Steps Walk 4 NF in Boardman, OH! 10:00 am (check-in/registration 9:00 am) Saturday, April 19, 2014 Boardman Park ...

Changes to MRI

  • By Vivien77 · Posted April 14, 2014
  • In NF1 and children · 1 reply
  • Hi, my 8 year son had an MRI recently as he had developed blurred vision in his left eye. The neurologist's secretary called me on Friday to say the results were back and there was no evidence of an optic ...

Up all night

  • By buzwarped · Posted April 13, 2014
  • In Living with NF1 · 6 replies
  • was up all night due to phantom pains and phantom sensations. lost my leg above the knee last oct. been trying mirror therapy and meds, any amputees out there with advice that can help me?left out other ...


  • By lucylastic · Posted April 13, 2014
  • In Living with NF1 · 7 replies
  • NF is enough It is enough to make you feel like you are abnormal, even crazy. It is enough to baffle some doctors. it is enough to make you want to pull your hair out in frustration when people think ...


  • By rsh · Posted April 12, 2014
  • In Living with NF1 · 8 replies
  • How common are Headaches in Nf1? For the last 2-3 weeks I have been having Headaches for about a total of 4-6 hours a day, some mild some more painful, I don;t always take tyelnol for it, though I have ...

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