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Miserable life with NF 1.

GabrielSiahJunhao
  • By GabrielSiahJunhao · New reply 1:34 am
  • 24 replies
  • Thanks to those people that gave me some advice on my previous post. I am feeling better and longer have the thoughts of suicide. That's very immature. Me having neuro is the fact, but I don't accept ...

UPDATE

superlyss
  • By superlyss · New reply April 17, 2014
  • 3 replies
  • Okay so its been 3 years since i been on this site... i don't know want to say but here it goes... im about to be 20 and im scared. i have a dog whos my best friend. (i also have human friends too lol ...

My doughter Diana

oscarminer
  • By oscarminer · New reply April 16, 2014
  • 14 replies
  • My daughter Diana has NF2 and it is in places they cannot operate on in her brain and on her spine. Knew she had some lesions on her upper spine but during her last they found 2 new 3mm in size on her ...

Miserable life with NF 1.

GabrielSiahJunhao
  • By GabrielSiahJunhao · New reply April 15, 2014
  • 26 replies
  • I am 14 y/o. I got NF 1. It didn't affect me much until I became 13. I got laughed by my friends because of my freckles and big birthmark all over my body. When I quarrel with my siblings, they used my ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Matthew

KingCrimson
  • By KingCrimson · New reply April 14, 2014
  • 2 replies
  • My son I hadto admit to the hospital yesterday they kept him overnight and they want to keep home tonight um I live in a really small town they don't have it anymore allergist about school and there is ...

im sick of want.

Nooksack
  • By Nooksack · New reply April 12, 2014
  • 2 replies
  • i just want this to be over reamove bump im sick of it.im want for the doc to call me and tell went remove it ...

Despres

Esikhena
  • By Esikhena · New reply April 5, 2014
  • 7 replies
  • Am Aways Feeling Wick, I Hadly Relate With People Because I Feel Embarrised But I Did't Relent In Finding Solution To This Prob. I Pray God To Grant Us His Grace ...

well did like to know if some one got stuck on stupid.

Nooksack
  • By Nooksack · New reply March 28, 2014
  • 1 reply
  • well to day i went to get my id i for got how to spell my name. i was in the DvE i did eat before i went, and be i want i saw my doc. and told was the b c in my famiy. my uncle die of the big c he had ...

cont...Harmony Rose

Gamom30
  • By Gamom30 · New reply March 27, 2014
  • 3 replies
  • Jan 8 20014 Harmony had Brain surgery to debulk plexiform tumor on right orbital frontal lobe behind eye, reconstruction of eye socket and debulk neurofibroma on maxillary nerve ...at this time we are ...

Matthew

KingCrimson
  • By KingCrimson · New reply March 26, 2014
  • 2 replies
  • My son was in Hosp. Mon.-Th. this week. He had horrible meltdown. No pediatric psyclogists or neurologists in town. Discharged. Have to wait for next meltdown and bring him 60 miles to Chicago. Bullshit ...

Meet Harmony Rose

Gamom30
  • By Gamom30 · New reply March 26, 2014
  • 3 replies
  • Hi , im Julie i live in Ga , i am 31 yrs old , I am the mother to two wonderful children ,Trenton (7) and my baby girl Harmony Rose (2) , Harmony was 4.5wks early ,she weighed 10lbs (which turned out ...

Good news.... Kind of....

amys-lumps
  • By amys-lumps · New reply March 25, 2014
  • 9 replies
  • Hello everyone, had a bit of good news the other day that hopefully I will be having 4 tumours removed, 1 from both sciatic nerves, 1 in my neck and 1 in the back of my right arm. But will be done in ...

Schwannomatosis

amys-lumps
  • By amys-lumps · New reply March 25, 2014
  • 3 replies
  • I am just curious to know if there is anyone in the uk with schwannomatosis, especially the south east ...

Embaressing surgery

purespirit
  • By purespirit · New reply March 24, 2014
  • 10 replies
  • Has anyone else had tumors removed from the genital area????? They used Lazar and some cutting,,,I would not wish this on anyone,,the pain is horrible today(day 6 after surgery) day one was burning but ...

Cancer

lautrelle
  • By lautrelle · New reply March 23, 2014
  • 16 replies
  • I will be going this morning for cancer testing-- please say a prayer that all is well with me and I do not have cancer ...

Dating.

cristinakline
  • By cristinakline · New reply March 22, 2014
  • 12 replies
  • Why is dating so hard? It's something I struggle with all the time. Does anyone have any advice or experiences with dating? This is a general problem for a lot of people whether you have NF or not. But ...

how to stop worry.

Nooksack
  • By Nooksack · New reply March 21, 2014
  • 1 reply
  • how to keep yoursefe bussy to make the day go fast ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

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