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Please - we need urgent help

  • By Mum23boys · Posted 4:40 am
  • Discussion in Newly diagnosed with NF1 · 0 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 ...

meeting others with NF

  • By GREENBAY1961 · New reply 3:54 am
  • Discussion in Off-Topic · 7 replies
  • I read post from others with NF looking to meet others with NF yet I go the extra mile to let them know where I work in the area and they still do not respond. I was at a NF meeting a couple of weeks ...

Let's Talk About It

CORRAE (Inactive)
  • By CORRAE (Inactive) · New reply 3:50 am
  • Discussion in Living with NF1 · 10 replies
  • Let's share some stories of those painful moments that eventually led to you joining this site. Relationships or friendships. There was this young lady a few years back that I'd never met in person. She ...

ride share to NF walk in Irwindale

  • By SEFord-1990 · New reply 3:47 am
  • Discussion in News, research and advocacy · 1 reply
  • For the past few years I went to the NF walk in Irwindale and got a ride. But changed date of the walk and the organization hosting the NF walk. I was wondering if any body here was participating in that ...

Sleepless Nights

  • By Lrnx33 · New reply 3:45 am
  • Discussion in Living with NF1 · 11 replies
  • For the past few weeks I have not been able to sleep much I may dose off for an hour or so at a time I can never get good quality sleep anyone else have any suggestions I am always so sleepy ...

radiotherapy and chemo for schwannomas ?

  • By kala · New reply 3:25 am
  • Discussion in Schwannomatosis · 1 reply
  • Did anyone have radiotherapy or chemo for begnin tumours ? I'm after 15 spinal ops and I still have tumours by the dozens in my spine pelvis stomach buttocks arms and legs . I've been told that there ...

Tingling and pain?

  • By mamsmurf1o1 · Posted 3:24 am
  • Discussion in Living with NF1 · 0 replies
  • I was diagnosed Neurofibromatosis as a baby. I am now 20 years old and recently started getting tingly in my right leg starting with my foot and going up. I also get it in my right arm. It started on ...

Word association game

  • By Amzy · New reply 3:16 am
  • Discussion in Off-Topic · 5744 replies
  • So I have seen everyone seems to like the song game so i was wandering if yous would like to try the word association game It's a similar style to the song game, But here is how to play Once an original ...

? on neurofibromas

  • By Shawn75 · New reply 3:14 am
  • Discussion in Living with NF1 · 13 replies
  • do they they come an go like goose bumps depending on weather when it hot few pop up on arm when cold there gone they dont itch or bother they look like hives kinda ? Thank you ...


  • By TravisWCampbell · Posted 3:02 am
  • Discussion in Living with NF1 · 0 replies
  • Alright so i know smoking. Is bad as a whole but is it any worse with NF ...

THE SONG GAME!!! Revisited

  • By Miss-No-Name · New reply 2:35 am
  • Discussion in Off-Topic · 7297 replies
  • GAME RULES: *One person posts a song *Then the next person takes a WORD from that song & adds another song which contains that same word. example.. "Don't STOP believing" Journey (next person) "STOP In ...


  • By taffy222 · New reply 1:17 am
  • Discussion in Schwannomatosis · 7 replies
  • Just wondering whether having schwannomatosis makes one more prone to uterine fibroids? I have had fibroids for around 15 years which haven't really affected me much until the last 2 years where my periods ...

Gonodal Mosaicism???

  • By nofear2012 · New reply 12:08 am
  • Discussion in NF1 and pregnancy · 4 replies
  • Hi all, I've recentlly descoverd this site, and is from it that I become aware of this case called gonodal mosaicism. Me and my husbant have a baby girl who's been dignosed with nf when she was less then ...

help what to do went you can go to the bathroom

  • By Nooksack · New reply yesterday at 11:39 pm
  • Journal · 1 reply
  • im cant go poop because im very scacred what to do i try very thing? help me ...

PGD/IVF for NF1 (not infertility) covered by insurance?

  • By KellieRod · New reply yesterday at 8:02 pm
  • Discussion in NF1 and pregnancy · 3 replies
  • Hello, I am new to this group but have been on the Inspire group for some time now. I was diagnosed with NF1 in 2010 at the age of 28 after having a few miscarriages. I then went on to having an extremely ...


  • By kerinkerry · New reply yesterday at 7:53 pm
  • Discussion in Off-Topic · 18 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 ...


  • By Artie_Dee · New reply yesterday at 7:48 pm
  • Discussion in Off-Topic · 63 replies
  • When we were playing the "Same Title. Different Song" game, a few of us posted songs that were "covers." That is, the same song performed by two or more different artists. For example; ROLL OVER BEETHOVEN ...

Birth Control Pills

  • By Carol08 · New reply yesterday at 7:17 pm
  • Discussion in Off-Topic · 15 replies
  • Is it dangerous to take birth control pills if I have NF? I have my doubts.. Thank You ...

has anyone in ur family died from either type of nf

  • By tn2209 · New reply yesterday at 7:07 pm
  • Discussion in Living with NF1 · 9 replies
  • has anyone in ur family died from either type of nf ...

hi from connecticut

  • By robbyjet · New reply yesterday at 6:57 pm
  • Discussion in Living with NF1 · 5 replies
  • i have nf1 but can ialso have schwannomatpsis?i have the cafe-o lay spots with hair growing out of them.the noudles are all over my lower body,foot leg's.i always get headache's and back .my back hurts ...

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The Neurofibromatosis Network Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Neurofibromatosis Network, an Inspire trusted partner.