Newly diagnosed with NF1

Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).

Discussions

What to expect in first visit with specialist?

itsclose
  • By itsclose · New reply December 15, 2011
  • 7 replies
  • I am about to take my 18 yr. old son to Dr. Tonsgard's office this month for a first-time evaluation. He was at Children's Memorial over 10 years ago with inconclusive results. What might be accomplished ...

how was puberty for you?

mona723
  • By mona723 · New reply December 15, 2011
  • 6 replies
  • hey guys just curious abt everyone else, what was puberty like for you? did anything change at all during this time ...

Plexiform?

bestboy1
  • By bestboy1 · New reply December 13, 2011
  • 4 replies
  • My 2 1/2 year old has a strange spot on his back that the Dr. said might be a plexiform. Does anyone else have something like this? It is about 3"x3", has a little more hair than the rest of his body ...

Looking for good dr for nf for child in Ottawa Ontario

Meandmygirl
  • By Meandmygirl · New reply December 12, 2011
  • 7 replies
  • Looking for a experienced dr for my 2 1/2 year old with NF Live in Ottawa Ontario ...

what were/are your disabilities

mona723
  • By mona723 · New reply December 11, 2011
  • 7 replies
  • what symptoms made you think you had nf1? disabilities ...

How long until you were diagnosed?

R164dab
  • By R164dab · New reply December 8, 2011
  • 7 replies
  • I have seen 3 doctors all who think I have nf1, now I'm waiting to see a dermatologist, I have an appointment but by the time I'm seen it will be 4 months since I was referred by the doctors. My question ...

NF and pregnancy

nicumomof27weeker
  • By nicumomof27weeker · New reply December 8, 2011
  • 11 replies
  • This is my first time on this site, HI to all. So I was wondering about NF and pregnancy. I want to know if having a pregnancy with a NF baby will cause Pre eclampsia or HELLP? This topic is new to me ...

Step Son 16 With NF1

NewlyMarried
  • By NewlyMarried · New reply December 7, 2011
  • 4 replies
  • I am recently married 1 year to be exact to my grade school sweetheart in the time we were apart she had 2 children one with NF one not her son is 16 ! Upon getting into the relationship again i asked ...

Gene deletion

Meandmygirl
  • By Meandmygirl · New reply December 7, 2011
  • 1 reply
  • Who here has a gene deletion. Or has a loved one with a gene deletion. What problems associated with the disorder are you dealing with ...

how were you diagnosed?

mona723
  • By mona723 · New reply December 4, 2011
  • 14 replies
  • how did the doctor decide you had nf1 ...

when did you start developing tumor growths?

mona723
  • By mona723 · New reply December 4, 2011
  • 20 replies
  • when did you start developing tumor growths? when were you diagnosed ...

two children possible nf parents don't have nf

5babies2love
  • By 5babies2love · New reply December 3, 2011
  • 11 replies
  • We don't have a confirmation on NF yet. I have 5 children when my 13 year old was around 4 or 5 his doctor said oh my he has Neurofibromatosis! She said he had classic cals then later she said she just ...

what symptoms did you develop and how early?

mona723
  • By mona723 · New reply December 1, 2011
  • 1 reply
  • hello friends, hope you are all well. I wanted to know what kind of symptoms you had, and how old u were when they started to develop...I am 20 Also did you have lisch nodules, and were you able to see ...

FAMOUS PEOPLE WITH NF?

JerseyGurl0406
  • By JerseyGurl0406 · New reply November 27, 2011
  • 13 replies
  • JUST WONDERING IF ANYONE KNEW OF ANY? I KNOW THAT Jeff Francoeur DOES A LOT OF CHARITY WORK WITH NF....HAVENT READ ANYTHING THAT SAYS THAT HE HAS IT ...

NF and Thyroid Nodules

justme8677
  • By justme8677 · New reply November 26, 2011
  • 2 replies
  • I have just recently been diagnosed with NF after having my second neurofibroma removed and now I finally know what those little bumps on my stomach are anyways I have two nodules on my thyroid and had ...

a 4 year old with 7 cafe spots and a growth?

MommyMel
  • By MommyMel · New reply November 25, 2011
  • 10 replies
  • Hello anyone out there! I am new to the group and new to the world of NF. My adventure with all this started 3 weeks ago when reading Parents magazine mentioned multiple cafe au late spots being a possible ...

NF1 Questions

Jesses_mommy
  • By Jesses_mommy · New reply November 20, 2011
  • 2 replies
  • Hi my name is Katie I have a 2 year old son who I had to kind of convince the docs to test him for nf1 because of his cafe spots. I had asked my doc about 4 years ago to test me for it because I have ...

NF1 - Mutation analysis

JenV
  • By JenV · New reply November 18, 2011
  • 4 replies
  • My son was recently diagnosed with NF1. As you can imagine this news has been difficult to digest. I had not heard of NF1 before my son’s diagnosis (sporadic case). He is a healthy 18mo boy, developmentally ...

So unsure

nf1newbie (Inactive)
  • By nf1newbie (Inactive) · New reply November 16, 2011
  • 1 reply
  • I just recently found out I have nf1 from a clinical diagonises. I have never had any real problems. I have several of the brown spots, and a curve in my spine that was noticed when I was a teen. Other ...

Please help

Katy1981
  • By Katy1981 · New reply November 13, 2011
  • 2 replies
  • I'm having my first lump removed in a few weeks, from inside my ear. I'm not being put to sleep just a local. What I'm concerned about is the fact that I work in a nursery with 0 months - 4 years. Am ...

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