Discussion topics

Neurofibromatosis type 1 (NF1)

Newly diagnosed with NF1

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

When to worry about NF possibility?

elliottsmama
  • By elliottsmama · New reply yesterday at 11:03 pm
  • 23 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 ...

All 433 discussions...

Living with NF1

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

black outs?

LillySyn
  • By LillySyn · New reply 7:24 am
  • 4 replies
  • so I noticed that when I drink I sometimes have black outs. I was wondering if anybody else has the same thing. so I know what yall are thinking. its not that im binge drinking and partying like crazy ...

All 5,166 discussions...

NF1 and children

Information and support for parents of children with neurofibromatosis type 1 (NF1).

IM tired of haing hope

wrb_79
  • By wrb_79 · New reply 6:35 am
  • 2 replies
  • I m just tired ...

All 1,662 discussions...

NF1 and pregnancy

Find information and support here if you have neurofibromatosis type 1 (NF1) and are pregnant or thinking about having children.

Has anyone had a c section?

hazel_kinsel
  • By hazel_kinsel · New reply yesterday at 8:21 pm
  • 3 replies
  • I have nf and currently pregnant. Its looking like I will have to have a section as I experienced a very traumatic Vaginal delivery which nearly left me incontinent, so it recommended I have a c-section ...

All 209 discussions...

Neurofibromatosis type 2 (NF2)

Newly diagnosed with NF2

Information and support for anyone recently diagnosed with neurofibromatosis type 2 (NF2).

Wondering about other NF2 cases ..

anhnf2
  • By anhnf2 · New reply March 18, 2014
  • 3 replies
  • Hello, I just wanted to share my story and see what anyone else has gone through. I feel like I could have been diagnosed back in middle school when I had a bump on my face biopsied and came back as a ...

All 43 discussions...

Living with NF2

Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).

I need advice bad!! Loosing my hearing soon

katieleen
  • By katieleen · New reply April 22, 2014
  • 6 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 ...

All 287 discussions...

NF2 and children

Information and support for parents of children with neurofibromatosis type 2 (NF2).

Good Bye NF

GoodByeNf (Inactive)
  • By GoodByeNf (Inactive) · New reply February 26, 2014
  • 41 replies
  • Hi my name is Susie. I am a mother of four children. I have a very long history of this disease. My grandfather had brain tumors and passed in his late twenty's. My mother was 36 and died as well my aunt ...

All 33 discussions...

NF2 and pregnancy

Find information and support here if you have neurofibromatosis type 2 (NF2) and are pregnant or thinking about having children.

nf2 and pregnant

stephdev84
  • By stephdev84 · New reply September 4, 2013
  • 10 replies
  • I was diagnosed with NF 2 when I was 6 years old I just found out that I am pregnant I was told that I have a 50 50 percent chance I'm passing this disease to my children then I was told that there is ...

All 12 discussions...

Schwannomatosis

Share your story, find support and information, and discuss symptoms and management of schwannomatosis.

radiotherapy and chemo for schwannomas ?

kala
  • By kala · New reply 8:09 am
  • 3 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 ...

All 92 discussions...

Camp New Friends

For parents, campers and counselors and counselors-in-training to connect and keep in touch.

Austin Support Group

AngelCare
  • By AngelCare · New reply April 7, 2014
  • 4 replies
  • I am trying to put together a support group in Austin, Texas. I know that I have already been in touch with several people in and around the Austin area who are interested. Please follow me on my Facebook ...

All 40 discussions...

News, research and advocacy

Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.

NF Made the local newspaper in Ohio! NF awareness is spreading!!

NF_Network
  • By NF_Network · Posted April 21, 2014
  • 0 replies
  • Take a look NF community! The media came out to our Great Steps Walk 4 NF in Boardman, OH this past weekend! So exciting to get some press coverage and the word out about NF! http://www.vindy.com/news/2014/apr/20/wa ...

All 516 discussions...

Off-Topic

Share stories, laughter and anything else you'd like to in this open topic.

Word association game

Amzy
  • By Amzy · New reply 8:54 am
  • 5781 replies
  • So I have seen everyone seems to like the song game so i was wandering if yous would like to try the word association game It's a similar style to the song game, But here is how to play Once an original ...

All 1,143 discussions...

Help desk

Have a question about using the site? An idea for making it better? Post here and let us know how we can help.

Can someone not get any bumps from having NF

tay6973
  • By tay6973 · New reply April 20, 2014
  • 17 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 ...

All 180 discussions...

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