My name is Kristy and I am new to your group. I have neurofibromatosis. My mom has it and my younger sister has it. My older brother and his kids do not have it. My mom is the only one in her immediate family that has it. I would like to meet others who have it.
Hello Everyone, My name is Kristy and I am new to your group.? I have neurofibromatosis.? My mom has it and my younger sister has it.? My older brother and his...
Hi Kristy  My name is Terry. My father passed NF 2 onto my brother & I and I passed it onto my son. Terry ... From: Kristy Wilday <flowerlillies1@...> ...
Sorry about that.? I tried to proof read my errors and went to spell check and the next thing I knew, it said message sent.? That was weird. ~Kristy~ ... From:...
HI KRISTY MY NAME IS ALAN I TO HV NF2 IM48 I HAV A SON25 WIYH NF A DAUGHTER 24 SHE DOSNT HAV NFHAV YOU EVER BEEN TO THE NF CHAT ROOM IF NOT USHOULD CHECK IT...
Hi Terry, Thanks for sharing.? I am really not sure which type I have.? Maybe some of each.? All of my mom tumros are outer though, and she has them from head...
I also have them from head to toe. I get a lot of stares it use to bother me, but it no longer bothers me. I also have then internal. ... From: Kristy Wilday...
Sometimes you may just want to say "Hi" when someone stares, they are probably wanting to ask you a question and are afraid to ask you. I wouldn't be...
Hi I have to confess that I was staring at a girl at an event put on by Arrow electronics, I was sure she had NF as I do, and she did notice that I was staring...
That is true, Rob, unless they are sending you dirty looks; I've had that happen and it makes me feel very uncomfortable.? I don't know that it happens too...
I have seen a few people with obvious NF1, as I have, and I have always asked them if they had it. Both times we became very good friends and one even, who...
People stare at me. Big Whup! I saw a show a long time ago called "In search of" There were people with nf. They were all talking about wearing long sleeve...
... summer time i wear shorts and short sleeves if others dont like what they see let them stay hidden i be to busy enjoying my life to let them get to me...
hi Kristy i have it but not my mom or my father but i did pass it to my older daughter shes 7 and my younger daughter did not have it, im so glad i joing this...
Hi Tessy and all, Hope you don't mind this being long!!!! It's the same way in my mom's family.? None of her brothers and sisters had it and neither her mother...
Hi Kristy & everyone! I'm Rebecca or Becky, whichever you remember better. I'm also known as "Tumorfarmer" Yep! You know why! LOL :o) I have NF2 severely, and...
Hi Becky and all, Yeah, I couldn't remember the exact name of them but knew most of you if not all of you would not what I am referring to. I was too tired to...
well said. I have NF (not sure which 1 or 2) I have a mild case, ( I have an optic glioma, which has taken about all my vision in 1 eye, and a small portion...
oh i know what u mean people stear at me and they can be rude and mean both my girls dont have it but they sure do suffer the concecuances becuase sometimes...
Oh that is terrible! When I was young about 9 or 10 the kids at school told me my mom had aids and I had it too. That was really hurtful. The parents of my...
sorry meant to add a little more, but after spell check, hit send by accident I have a coworker, who is the sweetest girl around, she asked me, while telling...
oh i dont worry what people think about me what makes me mad is when someone hurt my daughters because of the way i look thats what im talking about. Tessy,...
Hi Tessy you know things like this really make me think about society, and people...... they wonder why we hate people?, we wonder where kids get it from? from...
thanks yes i know what u mean that's why the world is the way it is kids kill kids nobody cares about no one that's the problem if we all care for each other...
Yes, I know. But we live in a sinful world, so it's not always going to be easy for us. It's very sad of all the violence in the world. If Adam and Eve, had...
you're 100% right, it used to be that way, but something along the years went astray, it's sad. **************Great Deals on Dell Laptops. Starting at $499....
yes it is very sad when i was a teen or younger it was not this bad i wish it was like when i was a teen so my girls would have a better future Tessy, Destiny,...
oh trust me when they stear they dont just stare they make nasty coments like im a ugly munster and i belong in a mental institution and they make does...
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