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@...> ...
my daughter goes to the Shriners for her left leg that is bowing very badly out and she has had to wear an "AFO" brace since 4 months old. They are great!!!!! ...
Most definitely contact them. My daughter also has NF and wears braces on her ankles for support and they see her twice a year. Nikki Benson Karate Dove...
Thankyou so much for your response.I heard if i get a plastic surgeon to do the job he will lave smaller scars.I am just curious, did you use a plastic...
Attn: man Reiklinghausen sufferers: Although I don't have this disease I have an interest in it because I read a book by a doctor who claimed to treat it...
omg i am interested who is this doctor can u give me his information i do have nf 1 and i suffer with on my face and my back and i constantly have to have them...
if is this true where and with which dr can i get this treat ment here in laredo not to many doctors knows about nf 1 or 2 but i do a little bet and i would...
Dr. Jules Samuels published his major work in 1947 titled 'Endogenous Endocinotherapy'. His belief was that a malfunction in the hormonal output of the...
this DR might have been able to learn alot more if he would have had a electron microscope back then. would his finding have changed any if he knew a...
Hi all!! I just went for my annual eye exam, and I was referred to an opthalmoligist (sp) for a full retnial exam. after seeing him, he told me that my right...
hi, I have a tumor in my right eye socket I am also missing the bone there, because of this my eye is in alot and up to the right also. I had a mri about a...
Hi everyone, Hope this is ok to post here... You can see a list of my groups on Grouply at the link below. Maybe you'll find some you want to join. tessy ...
Hi, My younger brother has NF. I am working with the Texas NF Foundation to raise awareness. The foundation has asked me to propose a photographic project. I'd...
hi, 1 thing is for teaches to understand the kids they teach who have NF might have learning disabilities, the kids that have it try and try and try their...
does the foundation have any MRI's that can show how Nf affects the brain. the area of the Brain that is call the Hippacampus is the area of learning and...
please put me on "no mail/Special notices" until further notice. With this Tropical Storm Fay headed my way, I may lose power and don't want my email to bounce...
i have nf 1 and have noticed that the numbness and loss of feeling is getting worse and the feeling is starting not to return...does anyone else have this...
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