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After how much time does the bumps grow back if one get it removed
- By godisgreat · New reply 4:27 pm
- Discussion in Living with NF1 · 13 replies
- I have read that many people have got their bumps removed through surgeories....can you pls tell me that in case the bumps grows back , after how much they grow back normally..also wht is the amount of ...
Oh where oh where can my Avosil be?
- By baileysboots · New reply 4:22 pm
- Discussion in Newly diagnosed with NF1 · 10 replies
- After hearing some were trying a OTC topical cream AVOSIL for tumor reduction, I tried several Pharmacist to see if they stocked the product. Most said "HUH??" never heard of it, by itself or mixed with ...
Neuromas under the nail
- By debcal · Posted 4:19 pm
- Discussion in Living with NF1 · 0 replies
- Hello Everyone: I was wondering if anyone has had experience with their neuromas growing under their nails. My ortho hand doc seems to think that is one of the reasons for the severe pain that I have ...
Let's try again
- By jerecare · New reply 4:18 pm
- Journal · 7 replies
- There are some benefits of growing up pentecostal that prepared me for having HAD nf. For a time, I got sucked into the charismatic, specifically Word of Faith, movement. I am more discerning now. His ...
in lieu of medicine
- By jerecare · Posted 4:07 pm
- Journal · 0 replies
- Orange juice was my elixir of choice for a long time. We had to get the off-brand kind to save a few pennies, but it wasn't that good. Usually I will eat/drink anything (except alcoholic), but I've become ...
facebook..
- By strawberry_chick33 · New reply 3:59 pm
- Discussion in Off-Topic · 2 replies
- I was just wondering if anyone here has a facebook. If you do then let me know and we can try to become friends. I have never been able to talk to other people with NF. It would be nice to try and talk ...
how can i keep my identity as a person? or, how have you?
- By stillaperson004 · New reply 3:45 pm
- Discussion in Newly diagnosed with NF2 · 9 replies
- hello, when i was 13 i was found out to have nf2. i lost my hearing and ability to move my face from the surgeries. i am now 18 and no one treats me like a person. my own parents label me "the deaf person ...
If you have NF and are against Health Care Reform - you are nuts.
- By twotimes3233 · New reply 3:37 pm
- Discussion in Living with NF1 · 26 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 ...
Happy to have found Inspire
- By carly4 · New reply 3:20 pm
- Journal · 3 replies
- I have yet to actually meet anyone who even knows what NF is let alone information about it . I find it very hard to explain the condition to people- so i just dont even try. Thanks again for all the ...
What's your outlet?
- By noangel1987 · New reply 3:14 pm
- Discussion in Off-Topic · 7 replies
- Hey everyone! Well last night I was over at a friend's house and things got kind of heated between him and his teenage daughter. As a friend I gave him advice on how to calm down and find something he ...
I'm a murderer! :P
- By KittyLover · Posted 2:55 pm
- Discussion in Off-Topic · 0 replies
- If you've read my profile, you'll know that I love spiders. Yes - spiders. When I find them indoors, I will relocate them to a more suitable location - outside or, in the colder months, to our heated/attached ...
"suffers"?
- By jerecare · New reply 2:53 pm
- Discussion in Living with NF2 · 16 replies
- I've been reading posts and several incidences of people asking or saying you/me "suffers" from NF. Who is a sufferer? Why do you choose to suffer with it? Suffer is not the same as living with it. But ...
Labor
- By jerecare · New reply 2:49 pm
- Discussion in Living with NF2 · 38 replies
- I've read a few posts. No one seems to mention what they do for work. Surely you all aren't on disability ...
Michigan????
- By Jpetre · New reply 2:48 pm
- Discussion in Newly diagnosed with NF1 · 8 replies
- I am moving back to Michigan and in need of a good Doctor. I am in the middle of trying to get a diagnosis and I am looking for a Dr. who may have a clue what NF is. Frustrated, anxious and in pain, Jennifer ...
Mtv True life called...
- By KATIELEEN17 · New reply 2:43 pm
- Journal · 42 replies
- so mtv true life called today...we talked for an gr and a half and they want a video. If they decide to film me they will be here as soon as next week for my surgery. I dont know what to do. only my parent ...
Mother And Daughter Both Diagnosed
- By Jaylasmom · New reply 2:25 pm
- Discussion in NF1 and children · 7 replies
- O.K. so I take my 21 month old to her first neurologist appt. She has had a huge spot on her right rib cage that goes from her back to her stomach. We have always just thought this was her birthmark ...
tumor/fibroma itch and pain
- By sringo · New reply 2:07 pm
- Discussion in NF1 and children · 9 replies
- My daughter has NF1. She has a number of tumors on her body, but not many bother her. She recently developed one on her inner upper thigh and it is driving her crazy! It is itching and is now an open ...
HEY!!!!!!!!!!!!
- By gagelonely · New reply 2:04 pm
- Journal · 5 replies
- How is everyone today ...
how to tell 7 year old he has nf
- By carly4 · New reply 1:52 pm
- Journal · 11 replies
- i have been ignoring my sons conditon since he was dianosed at 3 mts[deniaL?] He is now a second grader and is having some problems-speech,handwritting,reading- i think its time for me to deal with this ...
Going on chemo for optic glioma!
- By PhotoMomToFive · New reply 1:33 pm
- Discussion in NF1 and children · 11 replies
- My five year old daughter was diagnosed with NF almost a year ago via blood testing after we found a glioma on her left optic nerve. She has no other signs or symptoms. She just had her second MRI to ...
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About this group
The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration. The Neurofibromatosis, Inc. Support Community is sponsored by Neurofibromatosis, Inc. in partnership with Inspire.