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Daughter meets diagnostic criteria for NF, but genetic test is negative

chelle3
  • By chelle3 · Posted 9:55 pm
  • Journal · 0 replies
  • Hi. My daughter is 5 1/2 years old, she has multiple cafe au lait spots along with freckling in her axillary and groin area. When she was 2 years old she had the genetic test, which came back "negative ...

Sam Update

Noelle
  • By Noelle · New reply 9:17 pm
  • Journal · 4 replies
  • Hello: I just couldn't bring myself yet to title this "Ron & Noelle Update". Things are settling down here. I have collected over 200 stuffed animals, now it is just getting a count of them, setting up ...

clothing

Annie02360
  • By Annie02360 · New reply 8:18 pm
  • Discussion in Living with NF1 · 10 replies
  • anyone have any tricks that they use to hide tumors, the older I get the more I seem to get. I'm going to have to start wearing turtle necks and long sleeves all the time. I can get away with it in the ...

REMOVAL OF NUEROFIBROMAS

mellymel
  • By mellymel · New reply 8:05 pm
  • Discussion in Living with NF1 · 1 reply
  • Hi GUYS Thank You Guys for Being there when I need answers andmoral support . I Thought it would be nice to inform you I had surgery on the 11/12 for removal of NF in my back. I had about 30 of them removed ...

How do you go on???

mellymel
  • By mellymel · New reply 3:02 pm
  • Discussion in Living with NF1 · 14 replies
  • Hi Everyone. I am 33yrs old leaving in nyc. I am not sure if i have NF 1 or NF 2 . I read alot of information online and have diagnosed myself of NF1. I still have not been to a specialist but the Internist ...

Parent not sure if I should have diagnosis confirmed?

Steeler_fan_Roger
  • By Steeler_fan_Roger · New reply 10:04 am
  • Discussion in Off-Topic · 6 replies
  • My wife died two years ago from complications related to NF at the age of 31. Now my eight-year-old daughter has a large bump on her forehead and another small one on her lower lip. My feeling has always ...

West coast specialists?

Calebmyboy
  • By Calebmyboy · New reply 9:01 am
  • Discussion in NF1 and children · 2 replies
  • I have a 5 year old boy with NF1 and have been trying to find a NF specialist on the West coast (we live in Las Vegas). Can anyone help with some info.?? Thanks ...

Hey =)

Lilyy
  • By Lilyy · New reply 7:54 am
  • Discussion in Newly diagnosed with NF1 · 8 replies
  • hi im new and i was wondering if there is anybody from toronto i can talk to about nf1 ...

Evyn

evynsmom
  • By evynsmom · New reply 7:51 am
  • Journal · 2 replies
  • Evyn is 6 years old. He was 'formally' diagnosed with NF1 at 3 years old, although we've known since he was about 2 months old that he probably had it. Besides the diagnostic criteria, (cafe au lait spots ...

I just got a really back pain.

montessori43
  • By montessori43 · Posted yesterday at 8:15 pm
  • Journal · 0 replies
  • I had never until today had any pain with my tumors, I have one small one in my left side in the lower back. It is painful I can harly move. I read today that if you get numness on your hands and legs ...

SORRY, BEEN OUT OF TOUCH

NFADULT
  • By NFADULT · New reply yesterday at 7:30 pm
  • Discussion in NF1 and children · 6 replies
  • Sorry I have been out of touch for a while. My Father passed away last week. Things have been a little crazy. It was one of those things where you knew it wasw going to happen...but not quite this soon ...

Hot water

Noelle
  • By Noelle · New reply yesterday at 6:20 pm
  • Discussion in Living with NF1 · 4 replies
  • Here's a kinda weird question. When I take a shower, I like the water "HOT". My husband says it is like a sauna in the bathroom when I'm showering. When Sam was having alot of back pain, he would take ...

The Way people look at you and ask stupid questions about NF

stitcher
  • By stitcher · New reply yesterday at 2:58 pm
  • Discussion in Off-Topic · 36 replies
  • Good morning all, I'm sorry to come and write this, but I just need to vent. I am 51, single, with a daughter, who is 25 and has NF 1 also, because of the NF she has been diagosed as MMR, ok my venting ...

Embaressing/personal question

banana1946
  • By banana1946 · New reply yesterday at 2:43 pm
  • Discussion in Off-Topic · 4 replies
  • Hey Everyone, So I hope I don't step over any boundaries or personal space in asking this question, but I have to know if its just me, or if its a part of NF. I was diagnosed with NF1 at 3, I am now 28 ...

mother

sallyann
  • By sallyann · New reply yesterday at 2:11 pm
  • Discussion in Living with NF1 · 7 replies
  • As a mother how do you feel knowing how hard it will be when you know all the thing your child will have to go through the older he or she get ...

Renal Stenosis/NF1

jentrysmom
  • By jentrysmom · New reply yesterday at 1:21 pm
  • Discussion in Living with NF1 · 7 replies
  • Our 7 year old son has NF1 and hypertension. He was diagnosed with renal stenosis and the doctors recenty attempted to effect the renal artery by performing a percutaneous transluminal angioplasty. Unfortuately ...

New feature: video!

Brian
  • By Brian · New reply yesterday at 10:36 am
  • Journal · 19 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Don't mean to be morbid

grannyj
  • By grannyj · New reply yesterday at 10:18 am
  • Discussion in Off-Topic · 4 replies
  • My husband and I have been making a will recently. One thing I would like to do is leave my body for medical research. Does anyone out there know how to do that for NF research? Who/where would I contact ...

n.f

hodson
  • By hodson · New reply yesterday at 10:17 am
  • Discussion in Living with NF1 · 1 reply
  • I jast wanted to till you tat I had my n.f. bombs removd and had no problems ...

Explaining NF

Blaster
  • By Blaster · New reply yesterday at 10:16 am
  • Discussion in Living with NF1 · 6 replies
  • Hello All.... Occasionally I have the opportunity to 'educate' people I meet about NF. Because I am very open about such things, I designed a t shirt : http://i200.photobucket.com/albums/aa108 /walnutshells/NFshirt004.jpg ...

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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.