Newly diagnosed with NF1

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

Discussions

Could this be NF1?

Coffee_black
  • By Coffee_black · New reply December 31, 2011
  • 2 replies
  • Hi I have not actually been diagnosed with NF1 or any other genetic condition. However I have been suspicious for a few years that I might have something going on. I am a 26 year old male of North East ...

my 10 year old

deniseandterence
  • By deniseandterence · New reply December 23, 2011
  • 4 replies
  • My 10 year old daughter was just officially diagnosed with NF yesterday. She'd been seeing them since she was 2, but just now has enough characteristics. I'm so depressed over this, and I'm so afriad ...

Nf1 how bad is this condition

Ema83
  • By Ema83 · New reply December 23, 2011
  • 8 replies
  • Ive not long found out that I have nf1 bit I'm still unsure how bad of a condition this is. Also my son who is two has also got signs of having the condition ...

MRI's. Question

Jmjd02
  • By Jmjd02 · New reply December 22, 2011
  • 16 replies
  • Went to the genetic office today for the first time. My son only has cals at this time. I Learned today that they will not do an MRI at this time. My question is when do they do mri's? I feel like they ...

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 ...

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