The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
cancer with nf
- By shirleybird312 · New reply 12:50 pm
- Discussion in Living with NF1 · 15 replies
- Two years ago I had a nf tumor removed from my spine. Recently it grew back and I had to have it removed again. This time the report came back that it was malignant, so I am scheduled to see an oncologist ...
How can i work out with having scoliosis
- By ButterFlyGirl86 · New reply 12:49 pm
- Discussion in Off-Topic · 7 replies
- I have scoliosis and There are a few things I can do that dont hurt my back that bad when I work out. I have got off the lbs that I wanned to get off But I just want to get my Belly to go down some, I ...
HIT BY CAR!!!!!!!!!!!!!!!!!!
- By The_Night_Walker · New reply 12:47 pm
- Discussion in Off-Topic · 3 replies
- Well I started by day off with a bang( literaly) I was croseing the street and what do you think happend I get side-swiped by a car. So guess what I did; I reported it, yes me Sara Croft went to the police ...
your after life what does it look like to you
- By ButterFlyGirl86 · New reply 12:25 pm
- Discussion in Off-Topic · 18 replies
- I have been thinking alot about after I die how its going to be. I know that I am going to heaven, But it would be nice to know what it looks like, but no one knows. so what do you think it looks like ...
bowed legs?
- By Beaker85 · New reply 12:18 pm
- Discussion in Living with NF1 · 4 replies
- so I was lying on the bed with my fiance and all of a sudden he asks me.. whats with your legs? as it turns out my knees and feet are facing in.. turned toward each other. I just kind of shrugged and ...
Introduction
- By ChuckM · New reply 12:06 pm
- Discussion in Living with NF1 · 8 replies
- Hello all...I'm 61, gay, living with my partner of 17 years in Myrtle Beach, SC. I was diagnosed with NF1 many years ago, probably in my 30s when I had a neurofibroma removed from behind my right knee ...
broken leg
- By Dragonlvr1986 · New reply 11:28 am
- Discussion in Living with NF1 · 5 replies
- Does any else have a broken leg due to NF1? What do you do for the pain other than pain meds ...
SomeTimes I just dont know what to do anymore
- By ButterFlyGirl86 · New reply 10:53 am
- Journal · 4 replies
- I have been thinking alot about why things happen and I know that things happen for a reason we just dont know why it happens at the time. But I would love to know why now. I am only 23 and happly married ...
I'm a freak
- By swtlilwamom · New reply 10:35 am
- Journal · 32 replies
- Just a simple poem I thought of today I AM A FREAK You stare and point, at something new. If I am a freak, than so are you. It's ok that you dont understand But I'm just like you, with bumps on my neck ...
- By Jennifer32186 · New reply 10:08 am
- Discussion in Living with NF1 · 34 replies
- Hey if you have FaceBook and want to talk to people on there to and raise NF1 awareness put your name on here and we can add each other and support each other. There's also NF pages on there. It's starting ...
future children
- By chynf2 · New reply 9:31 am
- Discussion in NF2 and children · 7 replies
- I am 18 years old, I was diagnosied with NF2 when I was twelve years old. I inherited it from my father. I have always thought about having kids, and even though i was diagnosed at a very early age the ...
What's your outlet? Part Deux
Baby girl on the way.. due 2/8/10
- By luv2teachlttle1s · New reply 8:41 am
- Journal · 17 replies
- I have NF1 and am expecting my first child in Feb. I am very nervous and scared that she will get this disease. :( Please pray that she won't have this disease or any other health problems. Worried about ...
Java
- By jerecare · New reply 8:37 am
- Journal · 14 replies
- Man!! Java gives me a buzz now. It wasn't always like this. It seems the cheaper the quality of the coffee, the worse it gets. Bordering the psychedelic. Even the smell can incite mental anguish. To borrow ...
helllo
- By nikki_ph · New reply 7:37 am
- Journal · 4 replies
- hi friends,,,,, just get back from this site ...
Plastic Surgery
- By Geniusof2121 · New reply 7:33 am
- Discussion in NF1 and children · 4 replies
- I am 19 and was wondering if anyone knows about having NF1 and getting plastic surgery i have tumor on my right eye and would just like to look normal for once ...
Questions about unexplained weight loss for son
- By publictina · New reply yesterday at 10:18 pm
- Discussion in NF1 and children · 8 replies
- Hi Everyone: I have a son, age 15 with NF1. He has had some medical/surgical issues over the years but has been fine for years now. He was diagnosed with Precocious Puberty at age 11 and last month, an ...
feeling glum
- By Claireisima · New reply yesterday at 10:05 pm
- Discussion in Living with NF2 · 4 replies
- Hi I have NF2 and try to remain positive every single day. Most days i am fine but i have days when i get so so scared about my future. This board seems great but the majorfity of you guys have NF1. Does ...
anyone else
- By Kivalina · New reply yesterday at 9:58 pm
- Discussion in Living with NF1 · 15 replies
- Ever look at them selves and want to burst into tears.I am about to turn 40,was looking at my bare arms yesterday and burst into tears.Its compleately covered with tumors.My belly area has big ones all ...
can you help me find someone?
- By robertsfbc · New reply yesterday at 9:33 pm
- Discussion in Living with NF1 · 4 replies
- hey everyone my name is robert and i am trying to find someone i went to nf camp years ago here in texas, it was the international camp in 96? i think. hos name is matthew m____ski i am not shure how ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Group leaders
Discussion topics
You
About this group
The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration. The Neurofibromatosis, Inc. Support Community is sponsored by Neurofibromatosis, Inc. in partnership with Inspire.