Growing up, I used to feel like I was alone. But as I got older I learned that I was not. My mother suggested that I look for chat rooms and talk to people just like me and so far I've joined (about) 4.

I have a really good friend that gets worried whenever I'm about to have an operation (she hates when I'm sick). But if you can't explain it to your friends, your family is there to talk to; they're the only ones that can understand it better than anyone.

No one that Im close to has it so I don't understand how they would. It just sucks and I hate it.
What chat rooms have you joined??

Trust me, your family will understand; none of my friends have it either, but I am able to explain it to them. A lot of research helps with that (which also helped me cope with it). No one in my family has it, but they understand it well.

I can only remember 3: Inspire.com, this one, and MDjunction.com.

I always feel alone but that is what comes with NF...forever alone. I hate NF. Why did i have to be born with NF?

You are wrong when you say you are alone. You have all of us :)!! We can all stick together and get through this TOGETHER!! Even if we don't know each other personally, we can help each other through this support group whenever needed :)

same here and your not alone

Morgan...
You are just a hop, skip, and a jump away...
I believe MI. has an NF Support group.
Some NF groups are...
*NF Midwest,
* (semichiganfundraising) ...
*NF support group of West MI.

Oh trust me you are not alone. I understand what you are going through. I hate having NF, but what are we going to do right? We just have to educate ignorant people. Trust me, if you didn't have NF, they would find something else to poke fun at. At least with NF, it keeps the arseholes at bay...Sometimes...

I do understand what you are feeling. I hate having this and always wonder why me. It sucks living with it, but you are not alone with this,there are all of us.

New to this site I can relate. I constantly feel alone. I am the only one in my family with this condition. and while I have had some dates no long term bf and in my 30s with no bf and the rest of my family members siblings cousins etc are all getting married an starting their families.

I have been trying to find support groups. I am actually running the cupid undie run in Feb

Yes I have the same problem anyone I talk to doesn't understand it well unless if they got it too and have walked in our shoes to really understand what we deal with on a daily. Basis if your on Facebook there a great support group called faces of neurofibromatosis it's a closed group really great all of us that are on it everyone has NF so you've got a lot of us understand, and no matter what you ask it's a closed group so anything u put on there only people that see it is people who are in the group.