New posts

Is there a cure for any other genetic disorder?

kosman
  • By kosman · Posted 11:05 am
  • Discussion in Living with NF1 · 0 replies
  • Many of us on this forum are at least moderately aware of where the science is in finding an outright cure/effective treatment for NF. Effective treatments associated with various conditions brought on ...

I need advice bad!! Loosing my hearing soon

katieleen
  • By katieleen · Posted 9:30 am
  • Discussion in Living with NF2 · 0 replies
  • I having surgery in a few weeks that's will leave me deaf. As a music major, my hearing is everything. I haven't told my boyfriend or my friends. I'm not ready to lose everything. I need to know that ...

Please - we need urgent help

Mum23boys
  • By Mum23boys · Posted 4:40 am
  • Discussion in Newly diagnosed with NF1 · 5 replies
  • Hello, I have posted before about my brother and had some very kind replies. We are now in extreme need of help. I am scared that my brother is losing the will to live and I do not think that he is getting ...

Tingling and pain?

mamsmurf1o1
  • By mamsmurf1o1 · Posted 3:24 am
  • Discussion in Living with NF1 · 3 replies
  • I was diagnosed Neurofibromatosis as a baby. I am now 20 years old and recently started getting tingly in my right leg starting with my foot and going up. I also get it in my right arm. It started on ...

Smoking

TravisWCampbell
  • By TravisWCampbell · Posted 3:02 am
  • Discussion in Living with NF1 · 3 replies
  • Alright so i know smoking. Is bad as a whole but is it any worse with NF ...

help what to do went you can go to the bathroom

Nooksack
  • By Nooksack · Posted yesterday at 7:01 pm
  • Journal · 3 replies
  • im cant go poop because im very scacred what to do i try very thing? help me ...

Facial dermal neurofibromas in 4 year old ?

DKBaerholm
  • By DKBaerholm · Posted yesterday at 3:11 pm
  • Discussion in NF1 and children · 2 replies
  • Hi, I live in Denmark and our boy is diagnosed with infantile autism. He is now 4 1/2 years old and for 6 months now he has had 3 bumps in his face (2 on one chin and 1 on the other chin) At the same ...

radiotherapy and chemo for schwannomas ?

kala
  • By kala · Posted yesterday at 8:25 am
  • Discussion in Schwannomatosis · 2 replies
  • Did anyone have radiotherapy or chemo for begnin tumours ? I'm after 15 spinal ops and I still have tumours by the dozens in my spine pelvis stomach buttocks arms and legs . I've been told that there ...

PGD/IVF for NF1 (not infertility) covered by insurance?

KellieRod
  • By KellieRod · Posted April 19, 2014
  • Discussion in NF1 and pregnancy · 3 replies
  • Hello, I am new to this group but have been on the Inspire group for some time now. I was diagnosed with NF1 in 2010 at the age of 28 after having a few miscarriages. I then went on to having an extremely ...

Do bumps ever reduce in size ?

kosman
  • By kosman · Posted April 19, 2014
  • Discussion in Living with NF1 · 4 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 April 18, 2014
  • 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 April 18, 2014
  • Discussion in NF1 and pregnancy · 5 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 April 18, 2014
  • 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 April 18, 2014
  • 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 April 18, 2014
  • 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 April 18, 2014
  • Discussion in Living with NF1 · 5 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 April 18, 2014
  • Discussion in Living with NF1 · 10 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 April 18, 2014
  • Discussion in Living with NF1 · 9 replies
  • has anyone in ur family died from either type of nf ...

When to worry about NF possibility?

elliottsmama
  • By elliottsmama · Posted April 18, 2014
  • Discussion in Newly diagnosed with NF1 · 12 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 April 18, 2014
  • 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 ...

Things you can do

Support the Neurofibromatosis Network

Help the Neurofibromatosis Network reach its goals and support people like yourself by making a donation today.

Donate to the Neurofibromatosis Network

Discussion topics

Beauty Mark Nation

Beauty Mark Network

Resources from NF Network

Find an NF Walk Near You

Find an NF Walk Near You

Community leaders