Discussion topics

Neurofibromatosis type 1 (NF1)

Newly diagnosed with NF1

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

Just diagnosed as an adult

shankomatic
  • By shankomatic · New reply 12:00 pm
  • 11 replies
  • I am a 43 old adult male that just recently found out that I have NF1. I had several café spots as a child and the doctors passed them off as birth marks. I had some learning problems as a child but nothing ...

All 429 discussions...

Living with NF1

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

Still looking

Birdie2
  • By Birdie2 · New reply 11:50 am
  • 2 replies
  • Hi I'm still looking for my dad! He be in his sixties by now! I'm now 45 years old and been looking for him for over 25 years! Think his name is peter and may have the surname jones x ...

All 5,141 discussions...

NF1 and children

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

Bad start to spring break

Almkallas
  • By Almkallas · New reply 10:51 am
  • 4 replies
  • My daughter has Pseudarthrosis she is 7 years old and she first broke her leg at 4 mos. She has had several surgeries to place and replace rods. But, since 2010 she has been surgery free, She has had ...

All 1,655 discussions...

NF1 and pregnancy

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

I have a question

cindeezie
  • By cindeezie · New reply 9:39 am
  • 2 replies
  • Would taking prenatal vitamins affect a woman with nf1 ...

All 206 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).

what difficulties?

That-one-girl
  • By That-one-girl · New reply April 2, 2014
  • 2 replies
  • I have NF2 and I would like to know what you think effects you the most wether it is phisical or mental for me it is either the pain or the sensetive parts of the neurofibromas. Also say if you have tp1 ...

All 285 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.

Schwannoma Pain

enigma3361
  • By enigma3361 · New reply March 30, 2014
  • 8 replies
  • I have schwannomatosis in my left leg and hip area. I have had 10 tumors removed so far. Each time I have experienced relief. However, I still have many tumors and sometimes I am in a lot of pain. I recently ...

All 91 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.

Natural Progesterone Survey

Lori86314
  • By Lori86314 · New reply yesterday at 7:56 pm
  • 8 replies
  • To all (women and men): I am doing some informal research and would like to hear about people's experiences with NATURAL or BIO-IDENTICAL progesterone (NOT SYNTHETIC progestins found in birth control ...

All 512 discussions...

Off-Topic

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

BEFORE AND AFTER

kerinkerry
  • By kerinkerry · Posted 11:59 am
  • 0 replies
  • I like all the song games and word games and I'm a big fan of wheel of fortune. I thought it would be fun to play a before and after game such as 1st person would say : tv stand 2nd person : up straight ...

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.

Nf

sheriemay
  • By sheriemay · New reply March 11, 2014
  • 3 replies
  • Hello friends, i'm new here.. I'm Sheriemay Aguhob; 33yrs.old; from Manila, Philippines.. i have NF .. now i have a question to ask,, a person with NF can still work aboard? i haven't been to a doctor ...

All 179 discussions...

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