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For those who have loss of a Loved One....
- By KayCe234 · Posted yesterday at 11:19 pm
- Discussion in NF1 and children · 0 replies
- After speaking with a few people who have lost a love one because of NF and after a request, I decided to start this thread. I hope it can be a place for those who have lost someone to come and share ...
School districts and getting the services you need, what to do?
- By beautifulkana · New reply yesterday at 10:26 pm
- Journal · 4 replies
- My son is almost 3 and in California that is when his services are turned over to the school district. I've heard of all sorts of problems from my friends who have had to fight with the districts to get ...
do i have the right to feel to feel bad for myself????
- By selected1 · New reply yesterday at 10:07 pm
- Journal · 5 replies
- i am a 35 yr old woman with nf and sometimes i just wonder why. Why am i the only other one besides my dad who has it? Why do they get worse? why are people so inconsiderate or cruel about it. I have ...
Funniest Movie
- By anthony204 · New reply yesterday at 8:58 pm
- Discussion in Off-Topic · 29 replies
- Beer Fest Run Fat Boy Run Student Bodies 1980's Hot Fuzz ...
NF Hero Julia Perfetti to be on the Today Show, Thursday July 2
- By LumpsandBumps · New reply yesterday at 5:50 pm
- Discussion in News, research and advocacy · 13 replies
- http://ctf.org/Living-with-NF/nf-hero-ju lia-perfetti-on-to-be-on-the-today-show. html Six-year-old NF Hero Julia Perfetti and her mother, Laura, will be featured in the "Everyone has a Story" segment ...
Cyberknife?
- By hh5 · New reply yesterday at 5:16 pm
- Discussion in News, research and advocacy · 7 replies
- Anyone had any treatment with the Cyberknife ? Like does it work? All I know is that it send precision radiation on the tumor. But some says our tumor is in our genes and can regrow any time it wants ...
nutrtional supplement
- By DebbyS · New reply yesterday at 5:10 pm
- Discussion in Living with NF1 · 9 replies
- Hi! I recently got some good information that I would like to share. My cousin in Michigan husband (he died a couple years ago :( )had nf1 and her daughter and gradaughter also have it. She gave me a ...
Freckling on the neck?
- By beautifulkana · New reply yesterday at 4:44 pm
- Journal · 3 replies
- I thought freckling just appeared in the armpits and groin areas. But i read a posting that mentioned freckling on the neck. My son has some light freckling on the back of the neck. Could this be related ...
Confirmed cases of NF1 and NF2
- By Basenji53 · New reply yesterday at 12:27 pm
- Discussion in Living with NF2 · 6 replies
- Has anyone been confirmed through genetic testing to have both NF1 and NF2? I have read several posts where people claim to have both. Is this confusion because people with NF2 can have cafe'-au-lait ...
Stress
- By molz · New reply yesterday at 11:26 am
- Discussion in Living with NF1 · 14 replies
- I get stressed so easily, Is this due to Nf? Because I get stressed at the smallest of things. Help ...
does anyone know more
A good joke
- By GirlA · New reply yesterday at 10:32 am
- Discussion in Living with NF1 · 23 replies
- Feeling better today. Does anyone have a good joke or two? I have one: "What is brown and sticky?" Answer: A stick ...
MTV Casting Call. True Life: I Have Neurofibromatosis
- By LumpsandBumps · New reply yesterday at 10:13 am
- Journal · 67 replies
- True Life: I Have Neurofibromatosis Are you living with Neurofibromatosis? Do you have visible tumors or spots on your skin that you wish you could get rid of for good? Were you recently diagnosed with ...
Coming Out with NF
- By wpcooper · New reply yesterday at 12:05 am
- Discussion in Living with NF1 · 8 replies
- And I don't mean that in the way that it might sound... but having NF means that there are certain barriers around you - ones that may keep you in and ones that cetainly make you a bit distinguished from ...
Are Others Ignorant ..... or simply uncaring?
- By FLiceman · New reply July 2, 2009
- Journal · 22 replies
- ...... How interesting it can be when I speak to others on why I am not coming in to work today. I work for a very large telecommunications company which has home phone service, and fiber optics television ...
I guess I will introduce myself..
- By MomandRN · New reply July 2, 2009
- Discussion in Living with NF1 · 5 replies
- I am 32 years old. I have known I had NF1 my entire life. I was born with the CAL. I have quite a few CALs, but most can be hidden. I also have some bumps on my arms, but they are on the underside and ...
I need answers- I am having a nervous Breakdown!!!
- By MyJosie · New reply July 2, 2009
- Discussion in NF1 and children · 24 replies
- I am a 35 yr. old mother of 2. My oldest is 18, he shows no outward signs of NF. My youngest is 10, was born with cafe au lait spots all over her body. Our Pediatrician sent us to Boston for a consult ...
Tumor Humor
- By guilty_spork · New reply July 2, 2009
- Discussion in Living with NF1 · 13 replies
- NF shouldnt define us and we shouldnt miss an opertunity to laugh to ouselves. I look like a troll with a big misshapen torso and spindly arms and legs. Somone told me I look like a gumdrop with praying ...
Does anyone know about
- By mumsword · New reply July 2, 2009
- Discussion in NF1 and children · 3 replies
- my 3 year old son had pseudarthurosis of his right tibia. has any one had this or know about it i know as much as i can find out but know one knows anyone that has had it of the op to put it right witch ...
Feeling in a Daze
- By FLiceman · New reply July 2, 2009
- Journal · 5 replies
- Ok ... I just went to my scheduled appointment for my pain management doctor yesterday. Appontment at 4pm. I left his office, without being seen ... at 545pm. There was still an office half full, and ...
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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.