Dear friends On September 21st. 2008 I will be participating in the Boston Marathon Jimmy Fund Walk. I am walking 13.1 miles in memory of my brother who had ...
Melissa, I really admire you as I have malked 3 1/2 marathons for NF and it is one of the most rewarding experiences that you can have. Did you know that...
Please take your Birthday off the Calendar!! Anone who subscribes to this thread gets it added to their calendar everyday because yoe have it on everyday>...
hi my name is tessy im new here im a divorce mom with 2 girls one is 6 and my baby is 4, my 6 year old and me we have neurofribromatosis and i had learn to...
Hello, My name is Troy. I have NF2. People look at me strangely because of my face also. I found out about my desease in 1988 when my left eye was hurting so...
hi troy im in the same shoes i found out when i was 9 years old more or less anyway I'm glad u email me so we can become friends, my face start to look this...
Hi, My name is Nikki and i have four children. Me and my 7yr old daughter have NF1. I have known since about 4yrs old and my daughter i have known since she...
I wish that this room would be like the old days.... people would sign in andjujst chat. sure helped when you were feeling down and did not want to upset...
I'm farily new here, but I would like that also. Terry nikkichats <no_reply@yahoogroups.com> wrote: I wish that this room would be like the old days.... people...
http://www.youtube.com/watch?v=YVELz8zbf2g Debra Duncan Show - "Reggie Bibbs & Neurofibromatosis" The Debra Duncan show was a local TV talk show on ABC-Channel...
Hi José, We just saw the show and liked it very much. Wilna, my wife, also has NF1 and all the sympthoms are very alike. She has about 500 growths only on her...
hello everyone i also have NF1 and all my back is full of those things and in my neck too i have some in my face i would like to ask if anyone knows how can i...
I go in about once a year to have fibromas removed by laser surgery. It is called co2 Laser. Have had some removed on the face this way and it was successful...
Sorry I haven't posted in a long time. I was out of work since December and have spent a LOT of time looking for a new job. I finally got one as a teacher aide...
Hi there, sorry for not posting on here for a while, but l have been heavily involved in several issues where l live. Back in May 2007 l was elected onto our...
Hi, I looked for you on Reunion.com, but you weren't there. Please connect with me so we can keep in touch. -Tessy Do You Know Tessy? YES - Connect with Tessy,...
I had chatted with NF.org but when the went off to change to www.ctf.org the chat room went off line and I lose touch with the room, I don't see anyone I did...
Hello everyone, This is my second post. I have not been here in a while. I have NF. I have both the birthmarks and knots (tumors). It seems with age they...
I have had a tumor removed from just above my right eye brow and i was afraid it would leave a nasty scar but my surgeon did an awesome job at how he did it....
Hello everyone, hope your all well. Most of you from the united kingdom will know about the Neurofibromatosis Association. For those of you who don't there...
Hi. I'm Rosie, I have a 10 year old daughter with nf1. She has started to get lot of pain in her legs and is needing an op soon. Were in the UK, but there does...
Hi, my name is Meredith, and I am 24 with NF1. I have just started to get my "bumps", and its getting a little strange when I find something new on my body. I...
welcome! My name is Sherrie(41yr). I have NF1 and was diagnosed when I was 6mo old. I have all the cafe au lait spots and several subcutaneous bumps (they look...
Here is some info I extracted from an old medical book. This doctor was a specialist in treating hormonal imbalances using a diathermy machine. ... The two...
Welcome. I am Nikki and i am 35 with NF. I have four kids and only one so far has it. She has gone through chemo for a Optic Glioma. Email me any time. Nikki ...
I havent been in for a check up in about....12 years. I should probably go in. To be very honest, I live a happy healthy lifestyle, and 3/4's of the time,...
You should contact the Shriners Hospital. They are wonderful people who help others all around the world ... From: rosezielinski <rosezielinski@...> ...
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