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Celebrities with NF ties

Noelle
  • By Noelle · New reply 6:10 am
  • Discussion in Living with NF1 · 6 replies
  • Does anyone know of any other celebrieties other than Gillain Anderson (X-Files) who have ties with NF. For those who don't know, Gillian has a brother with NF. I was just wondering. I posted this on ...

need a few prayers

ollie
  • By ollie · New reply 4:18 am
  • Journal · 1 reply
  • hi there tomorrow i have to go back for a scan for a lump that is in my skull that is close to my spinal cord it has been very painfull i have been told that i need to get this seen to ASAP im not looking ...

Should I tell my in-laws I have NF

BunnyMom
  • By BunnyMom · New reply 3:55 am
  • Discussion in Living with NF1 · 6 replies
  • Hello everyone. I just found this site and very excited I can communicate with other people who are going through the same thing as me. I was diagnose with NF1 when I was in 8th grade. Now I am 25 and ...

Did your new growths during pregnancy go away?

BunnyMom
  • By BunnyMom · New reply 3:40 am
  • Discussion in NF1 and pregnancy · 1 reply
  • I am due next month with my second child. With these two pregnancies I have had so far, a new growth has appeared on my face and other places. So far I've gotten them removed (the ones on my face) so ...

NEW Please HELP!!

LauraJ
  • By LauraJ · New reply 2:31 am
  • Discussion in NF1 and children · 18 replies
  • Here is the situation with my 3 year old girl. I am VERY new to this so forgive me for my lack of knowledge....She has has two spots since she was born. Those spots have gotten darker. This summer she ...

pictures of individual with NF1

LoriNei
  • By LoriNei · New reply 12:58 am
  • Discussion in Off-Topic · 11 replies
  • My daughter in law appears to have NF1, even though she and her family do not know it. She is pregnant with my first grandchild and I am obviously concerned. Does anyone have pictures they could send ...

nf1 and speech delay

samjohn
  • By samjohn · New reply yesterday at 11:49 pm
  • Discussion in NF1 and children · 3 replies
  • My son has nf1 with significant speech delay. I was wondering if there are any good speech pathologist in california. Also any recommendation on good doctors for nf1 in general in california. I went to ...

Concerned

Bailey
  • By Bailey · New reply yesterday at 11:32 pm
  • Discussion in NF1 and pregnancy · 16 replies
  • Has anyone with NF1 had a baby and if so did your condition get worse or stay the same while you were pregnant? I am just curious and I know it may vary from case to case but any help on this would be ...

Kind words pls

jcma01
  • By jcma01 · New reply yesterday at 7:11 pm
  • Discussion in Living with NF1 · 7 replies
  • On Wednesday I had a tumor on my finger removed. Today (Saturday) I am home recovering, I can’t drive right now and my finger is swollen. I am also wondering if I did the right thing. Work is anxious ...

Nervous

C_S_NFPARENT
  • By C_S_NFPARENT · New reply yesterday at 5:41 pm
  • Journal · 8 replies
  • my son has a app with the ent next week. i dread it with a passion. the place on his tounge is bigger. i dont know if they will take it off or what. it scares me to think of it getting bigger, but he ...

student

LauraJ
  • By LauraJ · New reply yesterday at 2:49 pm
  • Discussion in NF1 and children · 4 replies
  • Hello everyone. I wanted to share this story. I am a middle school teacher. While I was passing out paper the other day to my students I noticed CAL spots on one of my students legs. I already knew she ...

'' IN PAIN''

shellymoon
  • By shellymoon · New reply yesterday at 2:40 pm
  • Journal · 19 replies
  • On Aug 25, 2008, at 3:54 PM, Shelly wrote: I am having a lot of seizures so many that my mommy is taking me back to Houston next week to see my neurolgist, I also am having migraines, was just diognosed ...

glad to be back home

stitcher
  • By stitcher · New reply September 6, 2008
  • Discussion in Living with NF1 · 2 replies
  • the hurricane that effected Louisiana is finially moved on. I was out of touch for 4 days,, due to power being out and having to evacuate. Hope everyone is doing well, We had no damage to my home, just ...

Sam Update

Noelle
  • By Noelle · Posted September 5, 2008
  • Journal · 0 replies
  • Hello: Sam had to go to Dartmouth today to have the nephroscopy tube replaced as it had slipped out some and was a bit kinked. It was done under local anesthetic and interventional radiology. We are home ...

NF1 AFFECTING APPETITE

SHARKMAN79
  • By SHARKMAN79 · New reply September 5, 2008
  • Discussion in Living with NF1 · 6 replies
  • Hi I'm new here, I am a 29 year old male diagnosed with nf1 about ten years ago. I have had two cervical laminectomys to remove numerous tumors. My first surgery was in 1999 and the last one in march ...

Anyone have plexiforms get smaller?

oldeschool
  • By oldeschool · New reply September 5, 2008
  • Discussion in Living with NF2 · 4 replies
  • My son has lumps that are showing up on many of his extremities, one of his doctors mentioned that they might be plexiforms. All of the rest of the doctors that we have seen have dismissed this idea because ...

Sam Update

Noelle
  • By Noelle · New reply September 5, 2008
  • Journal · 4 replies
  • It appears that the nephroscopy tube Sam had placed 8/29 is not draining. There has been no output from his right kidney today. We may have to go to the hospital tomorrow to meet with the "interventional ...

mri

momof4boyz
  • By momof4boyz · New reply September 5, 2008
  • Journal · 1 reply
  • so today is my sons big day his frist mri and sedation so i could not sleep last night i was not to warryed as my husband was going to go in with our son but he ended up in the hospital yesterday and ...

Thalomide

Noelle
  • By Noelle · New reply September 5, 2008
  • Discussion in NF1 and children · 2 replies
  • Has anyone heard of using Thalomide for scarcomas? Sam's doctor and I are talking about using that along with Sam's chemo treatments of Etoposide and Cyclophosphomide with Celebrex. I was just wondering ...

my son's doctor's appt.

suzieq323
  • By suzieq323 · New reply September 4, 2008
  • Discussion in NF1 and children · 3 replies
  • We saw the peds. neurologist last week. It was a good meeting with her. Her name is Dr. Janas. She was overall pleased with him and said he looked good. She did want to set us up with a neuro surgen though ...

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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.