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Living with NF1
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
children with parents who have NF1
- By Sumatra · New reply November 16, 2009
- 2 replies
- How do you handle questions by your children? I have a 4 year old son who knows way too much about my health, to the point that I'm scared I've scarred him for life. When a four year old asks if You've ...
If you have NF and are against Health Care Reform - you are nuts.
- By twotimes3233 · New reply November 16, 2009
- 38 replies
- I had to jump through hoops and actually change my "health care provider" (what a crock that term is - more like the thug with a gun that takes my money and then wants to give nothing in return) to get ...
neurofibromatosis in leicestershire and rutland
- By whoseyerdaddy · Posted November 15, 2009
- 0 replies
- hi is there anyone with nf1 or nf2 in rutland or leicestershire. if so im looking to arrange some meets in the local area, i have nf type1 and sometimes feel very alone as not many people understand the ...
Shaving
- By DrNiblik · New reply November 14, 2009
- 17 replies
- Okay... This one is mainly directed toward the guys. Well, maybe the ladies too with small bumps in areas where they shave. I have several small bumps on my face and have to be very careful when I shave ...
Tingling in fingertips
- By CalebS · New reply November 14, 2009
- 17 replies
- Recently I have developed a tingling sensation in my fingertips that is triggered by a nerve around my funny bone. I was recently at my family doctor asking about this and he said it was nothing to worry ...
death with nf1
- By mrlang1000 · New reply November 14, 2009
- 14 replies
- does nf1 shorten ones life ...
Vitamin D=Sunlight?
- By sweetiecat · New reply November 13, 2009
- 18 replies
- I have a question and I'm hoping you all can help me with it. When I saw the neurologist at Cincinnati Children's he wanted me to take mega doses of Vitamin D. Like 50,000 units a day for 30 days. He ...
Neuromas or fibromas (bumps)
- By AuntieRo · New reply November 13, 2009
- 2 replies
- Hi! What is the correct medical term for the bumps? What do you call them? Thanks ...
NF1 & Hearing Loss??
- By KayCe234 · New reply November 13, 2009
- 17 replies
- Just curious if anyone has had any hearing issues related to NF1. Max had his physical today and they did the test where they put the sensor in his ear and the sound waves come back. He failed. they want ...
Should I tell my in-laws I have NF
- By BunnyMom · New reply November 12, 2009
- 20 replies
- Hello everyone. I just found this site and very excited I can communicate with other people who are going through the same thing as me. I was diagnose with NF1 when I was in 8th grade. Now I am 25 and ...
bladder cancer
- By beval1 · New reply November 12, 2009
- 5 replies
- My husband is a 55 old man whao has been dealing with N.F all his life. He is totally disable the newest problen is that they are testing him for bladder cancer. The doctor say that any one with N.F.must ...
first colonoscopy
- By twofortwo · New reply November 12, 2009
- 9 replies
- Does anyone know if there are dangers in getting a colonoscopy. My sister is due for her fist (50 yrs old) My mom said that first don't let them mistake an nf tumor for a polup. Best to leave an nf tumor ...
Yumor question
- By Kivalina · New reply November 12, 2009
- 4 replies
- I have a tumor on my chin.Its a big one too for being on the face.Saturday my grandson head butted it and now its swolen and leaking something reminds me of like pimple junk but this isnot a pimple unless ...
Proud
- By little-laura · New reply November 12, 2009
- 11 replies
- We get to discuss allot on this site, some positive other not so much. I would like to know your nf proud moments. Whether its involving something your child, parents, brother, friend or yourself did ...
Soul-Crushing Depression
- By DrNiblik · New reply November 12, 2009
- 28 replies
- I'm not sure if it even had anything to do with NF, but I am given to periodic bouts of near suicidal depression. It doesn't usually last long, maybe a day or two, and then it passes. I'm sure this notion ...
Counting tumors
- By GirlA · New reply November 12, 2009
- 5 replies
- We see on occasion people on this website will say how many tumors they have. I have so many of them, of all sizes, that it is impossible for me to count them=even approximately. I can't see how they ...
Hormones and NF
- By Stacey1988 · New reply November 12, 2009
- 9 replies
- I was diognosed with a plexiformneurofibroma about a year ago. About 2 years ago I got implamon (a slow release progesterone only conraceptive) inserted in my arm. As I understand it neurofibromas can ...
Is gene transplant the cure?
- By Jill_Nic · New reply November 11, 2009
- 18 replies
- Im just wondering what everyone thinks about this. Would a gene transplant cure NF? It has been done ...
NF1 Depression and Anxiety can I get SSI
- By amandamgates · New reply November 11, 2009
- 21 replies
- I was disnosed with NF1 at birth, when i was about 2 - 4 years of age ( i remember the surgury but not the age) i had a growth removed from my back. other wise id be a hunchback. I have always had Anxiety ...
finding assistance
- By elim · New reply November 10, 2009
- 4 replies
- i have nf 1 and am trying to find assistance with paying for my medications while i am in the donut hole as insurance companies call them ...
