Active discussions

Smoking

TravisWCampbell
  • By TravisWCampbell · New reply 11:36 am
  • In Living with NF1 · 3 replies
  • Alright so i know smoking. Is bad as a whole but is it any worse with NF ...

THE SONG GAME!!! Revisited

Miss-No-Name
  • By Miss-No-Name · New reply 11:30 am
  • In Off-Topic · 7300 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 ...

Please - we need urgent help

Mum23boys
  • By Mum23boys · New reply 11:27 am
  • In Newly diagnosed with NF1 · 5 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 ...

A LITTLE BIT OF CHEER

Auntmala
  • By Auntmala · New reply 11:21 am
  • In Living with NF1 · 29 replies
  • THESE POSTS I MEANT TO INSPIRE AND GIVE YOU A LAUGH , THEY CUTE SO POSITIVE I HAVE TO SHARE THEM THANK YOU YOU'RE NOT MEANT TO BE RELIGIOUS I WILL TRY TO POST DAILY I HOPE IT WILL GIVE YOU A BOOST DAILY ...

Is there a cure for any other genetic disorder?

kosman
  • By kosman · Posted 11:05 am
  • In Living with NF1 · 0 replies
  • Many of us on this forum are at least moderately aware of where the science is in finding an outright cure/effective treatment for NF. Effective treatments associated with various conditions brought on ...

Word association game

Amzy
  • By Amzy · New reply 11:01 am
  • In Off-Topic · 5748 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 ...

Tingling and pain?

mamsmurf1o1
  • By mamsmurf1o1 · New reply 10:50 am
  • In Living with NF1 · 3 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 ...

Facial dermal neurofibromas in 4 year old ?

DKBaerholm
  • By DKBaerholm · New reply 9:51 am
  • In NF1 and children · 2 replies
  • Hi, I live in Denmark and our boy is diagnosed with infantile autism. He is now 4 1/2 years old and for 6 months now he has had 3 bumps in his face (2 on one chin and 1 on the other chin) At the same ...

I need advice bad!! Loosing my hearing soon

katieleen
  • By katieleen · Posted 9:30 am
  • In Living with NF2 · 0 replies
  • I having surgery in a few weeks that's will leave me deaf. As a music major, my hearing is everything. I haven't told my boyfriend or my friends. I'm not ready to lose everything. I need to know that ...

radiotherapy and chemo for schwannomas ?

kala
  • By kala · New reply 7:17 am
  • In Schwannomatosis · 2 replies
  • 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 ...

Gonodal Mosaicism???

nofear2012
  • By nofear2012 · New reply 6:52 am
  • In NF1 and pregnancy · 5 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 ...

UNDER COVER

Artie_Dee
  • By Artie_Dee · New reply 6:41 am
  • In Off-Topic · 64 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 ...

meeting others with NF

GREENBAY1961
  • By GREENBAY1961 · New reply 3:54 am
  • 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
  • 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

SEFord-1990
  • By SEFord-1990 · New reply 3:47 am
  • 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

Lrnx33
  • By Lrnx33 · New reply 3:45 am
  • 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 ...

? on neurofibromas

Shawn75
  • By Shawn75 · New reply 3:14 am
  • 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 ...

Fibroids

taffy222
  • By taffy222 · New reply 1:17 am
  • 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 ...

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

KellieRod
  • By KellieRod · New reply yesterday at 8:02 pm
  • 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 ...

BEFORE AND AFTER

kerinkerry
  • By kerinkerry · New reply yesterday at 7:53 pm
  • 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 ...

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