need a break - just some good luck

  • By Terry_Ann · Posted December 5, 2013
  • 7 replies
  • I no longer believe the saying "God does not give you more than you can handle" because I feel its a cruel joke the amount of stuff I am going through. I feel like I am Sisyphus - I keep pushing a rock ...


  • By Krissyleel48 · Posted December 2, 2013
  • 2 replies
  • My son is struggling with being recently diagnosed with NF1 and a huge tumor encasing his aorta. We are learning about this on our own but really wanting some support, maybe a group to actually meet in ...

Nilotinib (Tasigna) Study @ Riley Hospital, Indiana

  • By pappabowen · Posted November 30, 2013
  • 2 replies
  • I am posting this journal to let my fellow NF pals know that I participated in a drug study. The study was to find out the affects of Tasigna (Nilotinib) on Plexiform Fibromas, which are commonly found ...

more n more

  • By shazza45 · Posted November 29, 2013
  • 2 replies
  • well now i been told gt a nf tumor in brain app attatched to back of eye orbit greattttt not gt go sheffield have more scans and talk finaly to a proffesor who lnows about nf alos gt have scan of spine ...

I am new to inspire

  • By pappabowen · Posted November 27, 2013
  • 19 replies
  • Hello everyone. I am new to, but obviously not to NF1. I was diagnosed when I was about 2 years old. I have been lucky, my first surgery was November 2010 (26 years old) in my spine at c3 ...

Nf Type1 and cancer

  • 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

  • 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

  • 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.

  • 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 ...


  • 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

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


  • 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

  • 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

  • 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

  • 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

  • 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 ...


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

TV Appearance 11/12/13

  • 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

  • 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!!

  • 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 ...

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