NO I AM NOT GOING TO CAMP. I ALSO DO NOT HAVE KIDS carrieashley <no_reply@yahoogroups.com> wrote:hello, i just wanted to know if anybody was going to camp or...

Hi Julie you pose a good question, I am not autistic, but do have learning disability, and Mild retardation, (or so the MD says), I know it isn't exactly the ...

YES I AM GOING TO THE CAMP IN SATL LAKE THE ONE THAT IS JULY 30 TO AUG 8 . AND I WILL BE GOING TO THE FAMLIY CAMP THAT HERE IN TX MY EMAIL IS THIS ONE CAN...

hi my name is valerie i have nf1 i am 46 years old i have 3 children grown i never knew what i had until i had a family two of my 3 grils have nf1 my sister...

Hello Valérie You are very welcome to this group. I'm 30 years old and I know that I have nf1 since I'm a kid because I had to do early some surgeries and...

hello to all my nameis juliei have nf1 athough both myboys dont have nf they both have autism,do you think there might be a connection?...

Hi, new member here. I'm a 30 y/o with NF. My dad has NF as well. Most of my tumors are on my spine, although I do have external ones as well. I live in an...

Hi Nora  My father had NF, I have NF, my son "Paul 30 years old"  has NF. Thank God my new granddaughter does not NF. I had a groth on my small intestine,...

Hi Terry, Nice to meet you. That's good that your granddaughter doesn't have NF. :) Have you had any problems with tumors in the intestine since you had that...

hello everyone im tessy i have nf but not sure if is 1 or 2 anyway nobody in my family has it im the only one and when i got pregnat my first daughetr shes 7...

Tess, welcome to the group.  I am not certain which one I have or if I have both.  I think it's NF1.  One of them effects sight and hearing and that's not...

So far I haven't. I beleve that whatever comes my way, God will get me through it. So I don't worry about what might happen. Terry ... From: littlenloud78...

Nice to meet you, Kristy and Tess -- I'm also not sure if i have NF1 or NF2; it seems that I have more symptoms related to NF2, but my  Dad had NF1.  The...

Hi Nora and all, I think we are always going to run into some people that are really rude, but not everyone is like that.  Some people I have found are just...

hello everyone, I get most of looks from small children because of my right eye being close more because I am miss the bone behind it, once in a while I get a...

thought id say hi everyone. i havent had much luck in the past with online chats etc. re: nf. even tried starting a my space "community" to see if id find...

Hi John, How does the Gabapentin work for you?  I don't have insurance, so don't take anything stronger than Ibuprofin, which you know... takes the edge off,...

Hi Nora, Gabapentin is not cheap a 800 mg is about $3.80 each, it is not like ibuprofin you don't just take it when needed have to take it 3x per day at the...

hi john, thanks. i'm familiar with what Gabapentin does, since I'm a nurse, but just wondered, since it is so expensive, if you liked how it worked for you. I...

hi crysti i agree with u i hate when people are rude to me they wotn even let their kids play with my kdis i have NF1 is not to sever but i had some of the...

mean parents...mean kids...i do not mean or wish that but any one can have a scars/bumps on face...by birth or by accident so if GOD forbidden some thing...

Wow Tessy, That's horrible.  I'm sorry that happened to you.  Nora ... From: Tessy Merino <laredogirl_20006@...> Subject: Re: [Neurofibromatosis] Re:...

Hi Tessy, Yeah, I can give you the name of the book. I have to go find it. It's called "Lisa H" The True story of an extraordinary and Courageous Woman, by ...

Hello Everyone! I'm Becky (Rebecca)from North Carolina, I don't always get a chance to read all of the postings for our group, but I try to reply to any that I...

hi Becky, It has definitely been frustrating trying to get treatment.  While my neurologists are knowledgeable enough about the condition to realize that...

some one told me Acupuncutre (a chinese way of treating people) is good...i am not aware as how much authentic it is but net can be searched for this...

Hi Nora & Everyone! Yes, getting pain management is difficult because so many people are scamming doctors trying to get pain killers or any other prescription...