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Do bumps ever reduce in size ?

kosman
  • By kosman · Posted 11:14 am
  • Discussion in Living with NF1 · 0 replies
  • I always assumed that bumps, one they appear never shrink even a bit. But I've read a couple of posts here from people who say a couple of bumps reduced in size.....like bumps that appeared during pregnancy ...

Any Neurosurgeon Specializing in Neurobribromatosis in Montreal???

Neezzer
  • By Neezzer · Posted yesterday at 10:45 pm
  • Discussion in Living with NF1 · 4 replies
  • Hello, Does anyone know of any Doctors that are specialized in Neurofibromatosis in Montreal or understand the condition very well? Can't seem to find any... Cheers ...

Gonodal Mosaicism???

nofear2012
  • By nofear2012 · Posted yesterday at 5:45 pm
  • Discussion in NF1 and pregnancy · 2 replies
  • Hi all, I've recentlly descoverd this site, and is from it that I become aware of this case called gonodal mosaicism. Me and my husbant have a baby girl who's been dignosed with nf when she was less then ...

Ft. Lauderdale, FL Great Steps Walk 4 NF - T-Shirt Deadline TODAY!!!

NF_Network
  • By NF_Network · Posted yesterday at 2:30 pm
  • Discussion in News, research and advocacy · 0 replies
  • Ft. Lauderdale, FL - T-shirt Deadline TODAY (4/18/14)! Be sure to register to now to be guaranteed a t-shirt! Click here http://www.nfnetwork.org/nf-happenings/g reat-steps/florida-ft-lauderdale for more ...

Ohio - Great Steps Walk Tomorrow! Join us!!

NF_Network
  • By NF_Network · Posted yesterday at 2:29 pm
  • Discussion in News, research and advocacy · 0 replies
  • Good luck tomorrow Ohio (our 2nd Annual Great Steps 4 NF)! If you haven't pre-registered, it's not too late! Come out and join our volunteer walk chair, Jennifer (who, by the way, is awesome!!) and the ...

Anyone with NF living in the Toledo, OH Area?

Taqueme
  • By Taqueme · Posted yesterday at 2:25 pm
  • Discussion in Living with NF1 · 0 replies
  • Come on. I know there are people with NF1 or 2 in the Toledo area. Any of you want to hang out, have a cookout, go to a bar, a coffee shop or just talk with someone else who has NF? Lets get together ...

hi from connecticut

robbyjet
  • By robbyjet · Posted yesterday at 2:08 pm
  • Discussion in Living with NF1 · 4 replies
  • i have nf1 but can ialso have schwannomatpsis?i have the cafe-o lay spots with hair growing out of them.the noudles are all over my lower body,foot leg's.i always get headache's and back .my back hurts ...

false adverising

goodgirl4
  • By goodgirl4 · Posted yesterday at 11:52 am
  • Discussion in Living with NF1 · 5 replies
  • my husband who was born with a plexiform on his face has complained that the childrens ttumor foundation and other facebook nf groups always show happy children dealing with there illnessesthey never ...

has anyone in ur family died from either type of nf

tn2209
  • By tn2209 · Posted yesterday at 11:49 am
  • Discussion in Living with NF1 · 8 replies
  • has anyone in ur family died from either type of nf ...

When to worry about NF possibility?

elliottsmama
  • By elliottsmama · Posted yesterday at 11:22 am
  • Discussion in Newly diagnosed with NF1 · 8 replies
  • I really don't know which forum to put this in. I hope I chose the right one. In my googling searches, this forum came up a lot so I'm hoping to get some reassurance. My son is almost 3. He had a large ...

Where is financial assistance needed for NF patients and their families?

Nfa4c
  • By Nfa4c · Posted yesterday at 10:30 am
  • Discussion in Newly diagnosed with NF1 · 7 replies
  • I am launching a campaign to bring awareness to NF and the financial hardships patients endure treating this disease. Please share your input on where funds are needed the most to help diagnose, treat ...

What are the financial hardships for NF patients and their families?

Nfa4c
  • By Nfa4c · Posted yesterday at 9:52 am
  • Discussion in Living with NF1 · 6 replies
  • I am launching a campaign to bring awareness to NF and the financial hardships patients endure treating this disease. Please share your input on where funds are needed the most to help diagnose, treat ...

New Bumps..???

happynvchick84
  • By happynvchick84 · Posted yesterday at 1:17 am
  • Discussion in Newly diagnosed with NF1 · 2 replies
  • I just turned 30 and am newly diagnosed with NF1. Mostly I've had Cals and only about 4 bumps my entire life. Recently, it seems like new ones are popping up, mostly on my trunk. Does anyone know if stress ...

It's Okay

rshoop2014
  • By rshoop2014 · Posted April 17, 2014
  • Discussion in Living with NF2 · 5 replies
  • Hiiii! I'm 17 and was diagnosed with NF2 a little over a year ago, and I so far I've had 2 surgeries. First on my spine to removed two tumors and another to remove one on my right ear and my vocal cord ...

Chemo

Smiller0259
  • By Smiller0259 · Posted April 17, 2014
  • Discussion in Living with NF1 · 7 replies
  • I got an appointment to see a dr for my nf. There's a little girl in my home town who has a tumor on her brain from nf and she is taking cemo to shrink the tumor ( it's on the inside and not cancer) but ...

RAPAMYCIN STUDY

Artie_Dee
  • By Artie_Dee · Posted April 17, 2014
  • Discussion in News, research and advocacy · 4 replies
  • I was asked by other members of our group to see if I could find out the status of the clinical trial. After doing some research on my own and contact New York University Medical Center's comprehensive ...

Bumps removal question

kosman
  • By kosman · Posted April 17, 2014
  • Discussion in Living with NF1 · 5 replies
  • Hi. I've known I've had NF1 since I was a boy. Had the CALs and mild scoliosis which never needed treatment. Didn't get any tumors, bumps, lumps. NF1 didnt affect me at all, until now. I am now 33. Recently ...

liver Bicpy next week

Shawn75
  • By Shawn75 · Posted April 17, 2014
  • Discussion in Living with NF1 · 0 replies
  • I seen youtube videos on it ,,, Had a MRI last week was clear an few month ago hat TC scan of liver cause my Alkaline phosphatase where over 250 besides that it was fine no signs of neurofibromas spleen ...

Can someone not get any bumps from having NF

tay6973
  • By tay6973 · Posted April 16, 2014
  • Discussion in Help desk · 15 replies
  • is there any way that someone cant get as much bumps as people usually have ? Im 20 & i only have 2 very small bumps on my body; one on my left leg and another on my lower back. I have freckles all over ...

After Treatment

summer09
  • By summer09 · Posted April 16, 2014
  • Discussion in Living with NF1 · 4 replies
  • I hope I can get some advice from people who have had electrodisection or such surgery. I had treatment on my face, all over my cheeks and neck. It looks pretty intense. I was told by the doctor to wash ...

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