Journals

Nf Type1 and cancer

kittycat570
  • By kittycat570 · Posted November 27, 2013
  • 4 replies
  • Hi This year I had a cancer in my left leg ass. With NF. It has been a long journey for me. It started with my leg to swell up big time and then test after test then a 10hr op divvied over to different ...

Good News

Hippie1973
  • By Hippie1973 · Posted November 27, 2013
  • 3 replies
  • I went to see the surgeon yesterday. He advised me that removing the lump was all I really needed. It shrank down so much that removing it and some tissue would be almost as beneficial as removing the ...

Thank You, From Inspire

Walter
  • By Walter · Posted November 26, 2013
  • 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

Sianni is having Surgery.

HelenaK
  • By HelenaK · Posted November 26, 2013
  • 3 replies
  • Well I made the decision to stop Sianni's chemo meds do to the growth of her tumors. They medication wasn't working. So on January 20, 2014 Sianni will have a 8 hour surgery to debulk her tumors. I don't ...

Update

Jordan123
  • By Jordan123 · Posted November 22, 2013
  • 1 reply
  • We'll the chemo medication didn't work. It just made me worse so now I'm going in for surgery at the end of December hopefully it'll work ...

NF specialists in Indiana

Libertyeyes
  • By Libertyeyes · Posted November 21, 2013
  • 0 replies
  • Does anybody know of any that you would be likely to recommend ...

Appointment

Andrewmark
  • By Andrewmark · Posted November 21, 2013
  • 6 replies
  • I have finally got conformation of my neurology appointment. Dec 24 at 2pm. Christmas eve is not going to be the best time for this, but hopefully it will give me some answers as to why I am having so ...

meeting new friends

shockwave4044
  • By shockwave4044 · Posted November 21, 2013
  • 10 replies
  • Hello, my name is Kyle and I have nf type one. I'm looking for friends that I can chat with that have similar issues caused by nf ...

Laser Vision

Dancer22
  • By Dancer22 · Posted November 21, 2013
  • 1 reply
  • My eye sight is getting worse as I get older,, can you have laser vision with NF 1 ...

NF 1 6 year old granddaughter

missyprissy
  • By missyprissy · Posted November 19, 2013
  • 28 replies
  • My granddaughter was 2 months old when the dr noticed the spots. At 2 mon. she had 15 spots today she has a total of 31. She always has headaches. I asked her dr. if he should order at MRI or CT scan ...

A part of my life with NF 1 o

KGCostner-5
  • By KGCostner-5 · Posted November 18, 2013
  • 4 replies
  • I do believe I started my profile before but got cut off maybe by a storm or something. I have NF 1 ,I have no disfigurments I just have all the pain anyone canimagine and I hate it ,I am sick of it ...

Hello

ToBeOrNotToBe007
  • By ToBeOrNotToBe007 · Posted November 16, 2013
  • 3 replies
  • Is there anyone here from Australia?Preferable in West Australia ...

TV Appearance 11/12/13

Lorenzovictory
  • By Lorenzovictory · Posted November 15, 2013
  • 12 replies
  • Please check out my recent TV appearance about my book-ANYTHING IS POSSIBLE which talks about my NF and overcoming obstacles in your life . Its a short book also filled with many of my positive ,inspirational ...

In Memory of my mother

monstercat
  • By monstercat · Posted November 13, 2013
  • 5 replies
  • Mom lost her battle with life in September, after a suffering from Dementia, she was the youngest of 4 children born in 1937 her siblings were 18+ years older then her? and one of two born with NF1 her ...

just getting by!!

CharlotteRey
  • By CharlotteRey · Posted November 12, 2013
  • 4 replies
  • This is my first time talking about my NF1... I was told about my NF1 has a small child.. I always tryed to pretend that I had nothing wrong with me!!! I was petty good at making excuses for what's wrong ...

I HATE HAVING NF

JOSH310
  • By JOSH310 · Posted November 12, 2013
  • 5 replies
  • I hate having NF it is so F**KING annoying everyday i go to sleep I'm scare because I don't know if I'm going to make it the next day. Even when I'm a wake I feel that any given time something can happen ...

Fibroma on arm

Adriannexxxxx
  • By Adriannexxxxx · Posted November 11, 2013
  • 0 replies
  • Hello recently my fibroma on my arm has been changing constantly and causing me pain. My mum suggests that I undergo surgery to get it removed but I am very scared as I have already undergone. Umber ours ...

Depressed please help

Tgraham96
  • By Tgraham96 · Posted November 4, 2013
  • 9 replies
  • I think i see new fibromas forming , on my hands . you can only see them in certain light. But they could be anything. I could be getting worked up over nothing. I'm Just really scared, i dont really ...

Hanging in there

Hippie1973
  • By Hippie1973 · Posted November 2, 2013
  • 7 replies
  • On the 21st of November I go for my last chemo treatment. It's been hard. but I'm hanging in there. I've decided on having the entire breast removed, and the other one. My family supports me on this decision ...

Seizures

Mtnguru
  • By Mtnguru · Posted November 2, 2013
  • 9 replies
  • I have been having lots of seizures lately. And its been scaring me, they fry my memory ...

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