The Neurofibromatosis Network Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

red bumps

jlt5238
  • By jlt5238 · New reply 9:35 am
  • Discussion in Living with NF1 · 9 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 ...

Anybody wish they were never born?

wrb_79

Word association game

Amzy
  • By Amzy · New reply 8:54 am
  • Discussion in Off-Topic · 5781 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 ...

Balance issues

Hippie1973
  • By Hippie1973 · New reply 8:37 am
  • Journal · 4 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 ...

radiotherapy and chemo for schwannomas ?

kala
  • By kala · New reply 8:09 am
  • Discussion in Schwannomatosis · 3 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 ...

New treatment for schwannomatosis

kala
  • By kala · New reply 7:36 am
  • Discussion in Schwannomatosis · 17 replies
  • It seems that there might be new hope yet for treatment for schwannomatosis . Have anyone read this report http://www.uab.edu/news/latest/item/4014 -changes-in-gene-explain-more-of-inherit ed-risk-for-rare-disease ...

black outs?

LillySyn
  • By LillySyn · New reply 7:24 am
  • Discussion in Living with NF1 · 4 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

TracyWayne
  • By TracyWayne · New reply 7:08 am
  • Discussion in Living with NF1 · 4 replies
  • 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 ...

IM tired of haing hope

wrb_79

THE SONG GAME!!! Revisited

Miss-No-Name
  • By Miss-No-Name · New reply 6:25 am
  • Discussion in Off-Topic · 7360 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 ...

UNDER COVER

Artie_Dee
  • By Artie_Dee · New reply 5:48 am
  • Discussion in Off-Topic · 72 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 ...

Why is 5mm the diganosing factor

Missmimmy83
  • By Missmimmy83 · New reply 2:53 am
  • Discussion in Living with NF1 · 6 replies
  • why is having over 6 CALS that are 5mm or bigger is a diagnosing factor in NF, I am confused. 5mm is really really small. I know several people that have there are a lot of people that bigger ones that ...

What are the financial hardships for NF patients and their families?

Nfa4c
  • By Nfa4c · New reply 12:50 am
  • Discussion in Living with NF1 · 10 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 ...

is anyone else having trouble with there childs behavior in school

rozebud
  • By rozebud · New reply 12:29 am
  • Discussion in NF1 and children · 15 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 ...

When to worry about NF possibility?

elliottsmama
  • By elliottsmama · New reply yesterday at 11:03 pm
  • Discussion in Newly diagnosed with NF1 · 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 ...

Has anyone had a c section?

hazel_kinsel
  • By hazel_kinsel · New reply yesterday at 8:21 pm
  • 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 ...

A LITTLE BIT OF CHEER

Auntmala
  • By Auntmala · New reply yesterday at 8:15 pm
  • Discussion in Living with NF1 · 33 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 ...

Smoking

TravisWCampbell
  • By TravisWCampbell · New reply yesterday at 8:12 pm
  • Discussion in Living with NF1 · 10 replies
  • Alright so i know smoking. Is bad as a whole but is it any worse with NF ...

BEFORE AND AFTER

kerinkerry
  • By kerinkerry · New reply yesterday at 4:52 pm
  • Discussion in Off-Topic · 33 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 ...

meeting others with NF

GREENBAY1961
  • By GREENBAY1961 · New reply yesterday at 3:47 pm
  • Discussion in Off-Topic · 9 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 ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support the Neurofibromatosis Network

Help the Neurofibromatosis Network reach its goals and support people like yourself by making a donation today.

Donate to the Neurofibromatosis Network

Discussion topics

Beauty Mark Nation

Beauty Mark Network

Resources from NF Network

Find an NF Walk Near You

Find an NF Walk Near You

Community leaders

Inspire others

About this community

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.