Living with NF1

Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).

Discussions

false adverising

goodgirl4
  • By goodgirl4 · New reply 4:49 pm
  • 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 ...

A LITTLE BIT OF CHEER

Auntmala
  • By Auntmala · New reply 1:23 pm
  • 28 replies
  • THESE POSTS I MEANT TO INSPIRE AND GIVE YOU A LAUGH , THEY CUTE SO POSITIVE I HAVE TO SHARE THEM THANK YOU YOU'RE NOT MEANT TO BE RELIGIOUS I WILL TRY TO POST DAILY I HOPE IT WILL GIVE YOU A BOOST DAILY ...

Do bumps ever reduce in size ?

kosman
  • By kosman · New reply 11:28 am
  • 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 ...

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

Nfa4c
  • By Nfa4c · New reply 1:01 am
  • 8 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 ...

has anyone in ur family died from either type of nf

tn2209
  • By tn2209 · New reply yesterday at 1:20 pm
  • 8 replies
  • has anyone in ur family died from either type of nf ...

Skintight living

CORRAE (Inactive)
  • By CORRAE (Inactive) · New reply yesterday at 1:04 pm
  • 17 replies
  • If you didn't have NF1 OR NF2, can you honestly say you'd give someone a chance? Honestly. For myself, probably not. But when we face something that effects us directly, we become immediately more attentive ...

hi from connecticut

robbyjet
  • By robbyjet · New reply yesterday at 12:54 pm
  • 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 ...

Any Neurosurgeon Specializing in Neurobribromatosis in Montreal???

Neezzer
  • By Neezzer · New reply yesterday at 9:43 am
  • 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 ...

Sick

Smiller0259
  • By Smiller0259 · New reply yesterday at 6:22 am
  • 36 replies
  • I am so sick of living with NF1. Besides surgery which I've already had a few is there any kind of treatment? I just keep getting more tumors and it's killing me. I want help ...

It took me a long time

livelaughandcry
  • By livelaughandcry · New reply April 18, 2014
  • 13 replies
  • It took me a long time to join this network. It was not a denial of my condition, but rather embarrassment. This has been a big secret from my friends and co-workers. And it still is, but is getting harder ...

Anyone with NF living in the Toledo, OH Area?

Taqueme
  • By Taqueme · Posted April 18, 2014
  • 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 ...

Chemo

Smiller0259
  • By Smiller0259 · New reply April 18, 2014
  • 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 ...

Black spots in tumors

Kivalina
  • By Kivalina · New reply April 18, 2014
  • 6 replies
  • I had a few tumors start itching badly last night,Scratched them and noticed hard black things in them,they sometimes come out if pinched and its like a rock.What could this be ...

After Treatment

summer09
  • By summer09 · New reply April 17, 2014
  • 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 ...

Bumps removal question

kosman
  • By kosman · New reply April 17, 2014
  • 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 ...

Up all night

buzwarped
  • By buzwarped · New reply April 17, 2014
  • 6 replies
  • was up all night due to phantom pains and phantom sensations. lost my leg above the knee last oct. been trying mirror therapy and meds, any amputees out there with advice that can help me?left out other ...

Advice are talking to my doctor

Almkallas
  • By Almkallas · New reply April 17, 2014
  • 3 replies
  • I just got to read my MRI reports from September 2012 online. There are a few new things that showed up that my doctor did not tell me about. Now I want to talk to him about it, but I'm a little afraid ...

? on neurofibromas

Shawn75
  • By Shawn75 · New reply April 17, 2014
  • 12 replies
  • do they they come an go like goose bumps depending on weather when it hot few pop up on arm when cold there gone they dont itch or bother they look like hives kinda ? Thank you ...

? Blood Platelets

Shawn75
  • By Shawn75 · New reply April 17, 2014
  • 8 replies
  • does any one have crazy Platelets /Low Blood Platelets or Blood Platelets that go up an down up an down ? 52 103 88 , 116 129 87 to 44 month years in between them ...

liver Bicpy next week

Shawn75
  • By Shawn75 · Posted April 17, 2014
  • 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 ...

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