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"suffers"?
- By jerecare · New reply 10:37 pm
- Discussion in Living with NF2 · 12 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 & Toll
- By jerecare · New reply 10:34 pm
- Discussion in Living with NF2 · 1 reply
- I've read a few posts. No one seems to mention what they do for work. Surely you all aren't on disability ...
HEAD ACHES AND NUMBNESS AND TINGLING
- By pjkd · New reply 9:29 pm
- Discussion in Living with NF1 · 8 replies
- Does any one ever get the head aches and numbness and tingling in there hands and legs. When I get head aches it feels like my head it going to pop off. My leges even get tingling and numb ...
only one in my family with nf
- By mattdclarke1 · New reply 9:09 pm
- Discussion in Living with NF1 · 70 replies
- hi i would like to know if there is anyone else who is the only one in there family to have nf because i am please let me know if your out there ...
Mtv True life called...
- By KATIELEEN17 · New reply 9:07 pm
- Journal · 37 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 ...
If you have NF and are against Health Care Reform - you are nuts.
- By twotimes3233 · New reply 9:04 pm
- Discussion in Living with NF1 · 24 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 ...
WORK OUT
- By The-Dreamer · New reply 8:22 pm
- Journal · 3 replies
- Yesterday was the day, I started to work-out my exercises yestreday excludes calves abs along my tricepsalso i ran on the treadmill for 35,minutes.today i workout my Triceps,Biceps and a little on my ...
finally some relief
- By mk74tom · New reply 8:02 pm
- Discussion in Living with NF1 · 1 reply
- I know I was going to stay off here do to the reason it gets me thinkig to much about NF and some of the people I disagree with their veiws but I will just not read their topics. But I went to my pain ...
finding assistance
- By elim · New reply 7:37 pm
- Discussion in Living with NF1 · 1 reply
- 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 ...
Friends
- By jerecare · Posted 7:07 pm
- Journal · 0 replies
- Nothing personal you all. All this accepting friends before you can message a person is ridiculous. I am TOLD this feature is like Facebook and I abhor that. Personal messages, journals, discussions ...
NF1 Gene Deletion vs. Mutation
- By steph1of9 · New reply 7:05 pm
- Discussion in Newly diagnosed with NF1 · 12 replies
- My 2 yr old daughter had her initial appointment with the genetics clinic at Seattle Children's hospital this Thursday. It went well and the drs there were so nice. So our daughter has her official diagnosis ...
Michigan????
- By Jpetre · New reply 6:18 pm
- Discussion in Newly diagnosed with NF1 · 2 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 ...
Finding A Dr Who Will take my Insurance
- By Sapphire-Dolphin · New reply 6:03 pm
- Discussion in Living with NF1 · 20 replies
- I have been looking for a doctor who knows about NF1 that accepts my insurance. I have Illinois Health Connect formally known as Illinois HFS or medical card. I called them to ask and all I was told I ...
After how much time does the bumps grow back if one get it removed
- By godisgreat · New reply 6:00 pm
- Discussion in Living with NF1 · 2 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 ...
Need info about Dr. Weinberg for NF1 ?
- By godisgreat · New reply 6:00 pm
- Discussion in Living with NF1 · 5 replies
- Hi Everyone, My aunt is suffering from NF1. She has bumps all over her body including face. I would like to get some cosmetic surgeory done on her face to get her some relief. Can anyone pls tell me if ...
Did your new growths during pregnancy go away?
- By BunnyMom · New reply 5:47 pm
- Discussion in NF1 and pregnancy · 11 replies
- I am due next month with my second child. With these two pregnancies I have had so far, a new growth has appeared on my face and other places. So far I've gotten them removed (the ones on my face) so ...
GHOST
having a mri???
- By Shortcake7780 · New reply 4:11 pm
- Discussion in Living with NF1 · 8 replies
- im 28 and never had my nf checked out ....im not sure if I have nf1 or nf2 but my mom has also got nf and never been checked out.....Iv always been healthy NEVER get sick.....headaces or anything is it ...
Inspire members featured
- By Brian · New reply 4:05 pm
- Journal · 29 replies
- Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...
Teeth
- By CindyLouWho · New reply 2:36 pm
- Discussion in News, research and advocacy · 13 replies
- Not long ago, somewhere on here, I reported the results of a study that found that NFers were more likely to have dental issues, cavities specifically. I can't seem to find that thread. Just wanted to ...
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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.