New posts

black outs?

  • By LillySyn · Posted 8:03 pm
  • Discussion in Living with NF1 · 0 replies
  • so I noticed that when I drink I sometimes have black outs. I was wondering if anybody else has the same thing. so I know what yall are thinking. its not that im binge drinking and partying like crazy ...

Donating Blood

  • By TracyWayne · Posted 4:55 pm
  • Discussion in Living with NF1 · 1 reply
  • I am new here, and reading the stories helps to remind me of how blessed I am - things can always be worse. Of all the comments, finger pointing and such that we go through, I try to let it roll off my ...


  • By Birdie2 · Posted 12:59 pm
  • Discussion in Living with NF1 · 0 replies
  • Hi if your name is peter and your in your 60's and u live in the uk then contact me! Thank you xxx ...

Anybody wish they were never born?


Has anyone had a c section?

  • By hazel_kinsel · Posted 11:09 am
  • Discussion in NF1 and pregnancy · 3 replies
  • I have nf and currently pregnant. Its looking like I will have to have a section as I experienced a very traumatic Vaginal delivery which nearly left me incontinent, so it recommended I have a c-section ...

IM tired of haing hope


Balance issues

  • By Hippie1973 · Posted 9:19 am
  • Journal · 0 replies
  • Is any one else having balance issues. I've been walking with a cane for years now, because I'll just topple over. Here recently my left leg has been wobbly like it wants to give out. I know I have tumors ...

So where is the research today?

  • By kosman · Posted 8:30 am
  • Discussion in Living with NF1 · 3 replies
  • For at least the last 10 years, I've heard the optimists, including optimists in the scientific community say that a cure for NF might be 10 years away. Clearly, today we're far from an outright cure ...

Reaching 10000 Members

  • By rsh · Posted yesterday at 8:37 pm
  • Discussion in Living with NF1 · 4 replies
  • I do not know if this of interest to anyone on the site. We are fast approaching 10000 members here, sometime tommorrow or late tonight(pst) we have the 10000 member ...

red bumps

  • By jlt5238 · Posted yesterday at 8:04 pm
  • Discussion in Living with NF1 · 7 replies
  • I have about 10 spread out on my body, I can see more coming (small red dots) I have accidentally shaved one off while shaving my legs. can these even be removed? anytime I've accidentally shaved it off ...

is anyone else having trouble with there childs behavior in school

  • By rozebud · Posted yesterday at 3:56 pm
  • Discussion in NF1 and children · 12 replies
  • Hi my son will be 9years old next month and was recently diagnosed with NF1. He also was diagnosed with ADHD and learning disabilities when he was 3. But here in the past few months his behavior has become ...

Blood pressure

  • By FBD15 · Posted yesterday at 8:04 am
  • Journal · 6 replies
  • I am 62 now , I walk 5 km five days a week , to keep BP in check . Articles on BP and NF1 are co related and they scare me. My doc has prescribed a BP tablet of 5 mg to be taken every morning . Its keeping ...

3 year daughter has headaches and has MRI

  • By skrobinson7 · Posted April 21, 2014
  • Discussion in NF1 and children · 2 replies
  • My 3 year old daughter has been complaining that her forehead hurts. She complains that hurts couple times a week. Her neurologist is wanting to do a MRI. In the the mean while as we wait for the MRI ...


  • By sarahjane1980 · Posted April 21, 2014
  • Discussion in Living with NF1 · 2 replies
  • I was diagnosed with nf type 1 in 2011. It runs in my family as it has been passed on from my mum. I was in hospital getting my ovaries removed in 2010 as there was a cyst on my right one which I have ...


  • By Danielle371 · Posted April 21, 2014
  • Discussion in Living with NF1 · 11 replies
  • As most or all of you may know there is a 50% chance that your child will get nf. I would love my kid no matter what but is it selfish of me to want kids in the future ...

My Alarm Clock

  • By Emceeee · Posted April 21, 2014
  • Journal · 0 replies
  • Hi all. I am new here. Well, i just have to be somewhere that people can relate what we are going through with my daughter, Alex. She's 15 and was diagnosed with nf1 in my country on 2011. As far as support ...

NF Made the local newspaper in Ohio! NF awareness is spreading!!

  • By NF_Network · Posted April 21, 2014
  • Discussion in News, research and advocacy · 0 replies
  • Take a look NF community! The media came out to our Great Steps Walk 4 NF in Boardman, OH this past weekend! So exciting to get some press coverage and the word out about NF! ...

Long time lurker, interested in thoughts

  • By Cookeek · Posted April 21, 2014
  • Discussion in NF1 and children · 2 replies
  • I've been reading posts on here for a long time and y'all are such an encouraging community, I would really appreciate some thoughts on my situation. My ds just turned 3 in February, He was born with ...

Surgery for 7yo daughter.

  • By Almkallas · Posted April 21, 2014
  • Discussion in NF1 and children · 0 replies
  • My daughter Stella has Congenital Pseudarthrosis, she first broke her left tibia when she was 4mos old. Between 2008 and 2010 she 4 surgeries for rod placement and replacement. But, in late spring 2011 ...

Extreme pain

  • By TravisWCampbell · Posted April 21, 2014
  • Discussion in Living with NF1 · 9 replies
  • I have extreme pain though my whole body I have taken all kinda of pain medication and nothing works any help ...

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