Neurofibromatosis type 1 (NF1)
Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).
- 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 ...
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
- 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 ...
Information and support for parents of children with neurofibromatosis type 1 (NF1).
- By wrb_79
· New reply 6:35 am
- 2 replies
- I m just tired ...
Find information and support here if you have neurofibromatosis type 1 (NF1) and are pregnant or thinking about having children.
- 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 ...
Neurofibromatosis type 2 (NF2)
Information and support for anyone recently diagnosed with neurofibromatosis type 2 (NF2).
- 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 ...
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).
- 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 ...
Information and support for parents of children with neurofibromatosis type 2 (NF2).
- 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 ...
Find information and support here if you have neurofibromatosis type 2 (NF2) and are pregnant or thinking about having children.
- 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 ...
Share your story, find support and information, and discuss symptoms and management of schwannomatosis.
- 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 ...
For parents, campers and counselors and counselors-in-training to connect and keep in touch.
- 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 ...
Share news about neurofibromatosis, new research, information about upcoming advocacy events and ideas for increasing awareness.
- 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 ...
Share stories, laughter and anything else you'd like to in this open topic.
- 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 ...
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- 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 ...