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

Word association game

Amzy
  • By Amzy · New reply 3:08 am
  • Discussion in Off-Topic · 5796 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 ...

THE SONG GAME!!! Revisited

Miss-No-Name
  • By Miss-No-Name · New reply 3:07 am
  • Discussion in Off-Topic · 7369 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 ...

Genetic Couseling

susie7
  • By susie7 · Posted 1:12 am
  • Discussion in Living with NF1 · 0 replies
  • Am going to be having a genetic counseling in few days over the phone. What questions should i ask? I need some advice. Thanks ...

hysterectomy& nf

kerinkerry
  • By kerinkerry · New reply yesterday at 11:58 pm
  • Discussion in Living with NF1 · 21 replies
  • I'm wanting to have a hysterectomy I don't want to have kids and I don't need these hormones. Does anyone have worse pain with their tummors around period time ...

is anyone else having trouble with there childs behavior in school

rozebud
  • By rozebud · New reply yesterday at 11:00 pm
  • Discussion in NF1 and children · 17 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 ...

Anybody wish they were never born?

wrb_79

Has anyone had a c section?

hazel_kinsel
  • By hazel_kinsel · New reply yesterday at 9:15 pm
  • Discussion in NF1 and pregnancy · 4 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 ...

Please help

cathy_nf
  • By cathy_nf · New reply yesterday at 8:22 pm
  • Discussion in Living with NF1 · 5 replies
  • Does any one know where I can buy t-shirts and bracelet for NF ...

BEFORE AND AFTER

kerinkerry
  • By kerinkerry · New reply yesterday at 8:13 pm
  • Discussion in Off-Topic · 36 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 ...

CAN I PLEASE VENT

Auntmala
  • By Auntmala · New reply yesterday at 7:39 pm
  • Discussion in Living with NF1 · 16 replies
  • I WAS WAXING MY BROWS WHEN I FELT IT POPPING UP PIMPLE I WISH IT WAS ONE OF OUR LUMPY BUMPY'S RIGHT IN THE MIDDLE OF MY FOREHEAD NEAR THE TOP OF MY NOSE . IF I WAS A UNICORN NO PROBLEM BUT I'M NOT A UNICORN ...

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

KellieRod
  • By KellieRod · New reply yesterday at 6:31 pm
  • Discussion in NF1 and pregnancy · 10 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 ...

black outs?

LillySyn
  • By LillySyn · New reply yesterday at 4:27 pm
  • Discussion in Living with NF1 · 7 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 ...

Raleigh, NC NF Chat - May 16th!

NF_Network
  • By NF_Network · Posted yesterday at 2:08 pm
  • Discussion in News, research and advocacy · 0 replies
  • Raleigh, NC - Meet 4 NF (NF Chat) on May 16th! Where and When: Panera Bread Bakery 7840 Alexander Promenade Place Raleigh, NC 27617 Friday, May 16, 2014 (6pm - 8pm) If you'd like to come out for a good ...

UNDER COVER

Artie_Dee
  • By Artie_Dee · New reply yesterday at 1:41 pm
  • Discussion in Off-Topic · 73 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 ...

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

Nfa4c
  • By Nfa4c · New reply yesterday at 1:25 pm
  • Discussion in Living with NF1 · 11 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 ...

Why is 5mm the diganosing factor

Missmimmy83
  • By Missmimmy83 · New reply yesterday at 1:14 pm
  • Discussion in Living with NF1 · 7 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 ...

radiotherapy and chemo for schwannomas ?

kala
  • By kala · New reply yesterday at 11:54 am
  • Discussion in Schwannomatosis · 6 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 ...

Balance issues

Hippie1973
  • By Hippie1973 · New reply yesterday at 11:48 am
  • Journal · 5 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 ...

electroessicazione

maryy
  • By maryy · New reply yesterday at 10:49 am
  • Journal · 1 reply
  • Hello everyone! I wanted to know if any of you who made electroessicazione can 'send message through before and after photos to assess any scars thanks ...

Donating Blood

TracyWayne
  • By TracyWayne · New reply yesterday at 10:13 am
  • Discussion in Living with NF1 · 6 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 ...

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.