Discussion topics

Neurofibromatosis type 1 (NF1)

Newly diagnosed with NF1

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

Swimming in england

• By whoseyerdaddy · New reply yesterday at 12:51 pm
• 8 replies
• hey just an idea but i hav not been swimming since i was about 13 because i hate my body and have lots of marks on my chest, maybe other people with same problem could all arrange to chip in and see if ...

All 64 discussions...

Living with NF1

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

Being in love and having NF.

• By casseyb · New reply yesterday at 8:33 pm
• 9 replies
• I've always been worried that no one would fall in love with me cause of my NF. I always thought they would be disgusted by it or decide to leave me for it, so its always hard trying to find a mate when ...

All 799 discussions...

NF1 and children

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

Was anyone scared to have children?

• By alicia2408 · New reply yesterday at 3:38 pm
• 19 replies
• My Husband and i are talking about having a child down the road but we are scared that the child will get nf 1 in a more severe way then what i have. i have a mild to moderate form it. does anyone feel ...

All 284 discussions...

NF1 and pregnancy

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

How bad did you turmors grow during pregnacney/

• By banana1946 · New reply November 18, 2009
• 6 replies
• Hello, My husband and I are planning on getting prego soon. We are going to do genetic counseling and gene selection to ensure our child wil not have NF. Just curious to all the NF women out there who ...

All 40 discussions...

Neurofibromatosis type 2 (NF2)

Newly diagnosed with NF2

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

nf2

• By njm047 · New reply November 17, 2009
• 5 replies
• Sounds like most users of this site have nf one. Is ther a better discussion board for nf2. Also has anyone gone to MD Anderson for their nf2 ...

All 10 discussions...

Living with NF2

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

NF2 board

• By jerecare · New reply 12:42 am
• 1 reply
• Is there anyone who has experiencd NF2 on this board who is also a member/frequent contributor to the NF2CREW board ...

All 51 discussions...

NF2 and children

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

help!

• By angelab1975 · New reply October 9, 2009
• 4 replies
• My 15 year old daughter has NF2 and in the past couple of years has had a lot of behavioral issues, i.e. anger control, hyperactivity, unablility to maintain self control, etc. Any help or advice or answers ...

All 11 discussions...

NF2 and pregnancy

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

NF1 can it effect my pregent test

• By MONIQUEIJ · New reply October 4, 2009
• 2 replies
• i just would like to know if mild nf1or nf2 can affect pregenecy test results ...

All 2 discussions...

Schwannomatosis

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

Diagnosis after 22 years !!!

• By kala · New reply yesterday at 4:36 am
• 13 replies
• Finally after 22 years I've got a clinical diagnosis of schwannomatosis after a blood test to identify the gene. I've had 11 spinal operation and constant pain. But just to be able to put a name on it ...

All 14 discussions...

Camp New Friends

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

NF CAMP IN MICHIGAN

• By chefdavid · New reply September 28, 2009
• 6 replies
• I am in the process of starting an NF camp in Michigan I have a weekend FAMILY camp planned on September 18th 19th 20th just to see who would like to come and just have fun with other people with NF ...

All 12 discussions...

News, research and advocacy

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

Has anyone used Avastin for NF tumors?

• By Thordur · New reply November 19, 2009
• 6 replies
• I have NF2 and now the Dr are thinking about a Avastin treatment which is rather new to NF patient (or so i heared.). Is there anyone with NF on this board which has used, or is using Avastin? How is ...

All 64 discussions...

Off-Topic

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

Michigan Medical Marijuana, help pls!

• By Myke405 · New reply yesterday at 8:01 pm
• 7 replies
• Hello, My name is Myke I'm 21 years old and Was diagnosed with NF-2 at 17. My story is probably a lot like some of yours. I was getting thin, unable to move certain parts of my body and unable to do simple ...

All 188 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.

Agent Orange Possible Cause of NF1

• By casseyb · New reply yesterday at 7:38 pm
• 7 replies
• I have NF1 and my father was in the Vietnam war. I've done some research on how NF can be caused and in one of the sites I looked at it said that NF1 can be caused by Agent Orange. I went to the US Embassy ...

All 44 discussions...