Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Okay, so at the marathon yesterday, I met a woman who saw my NF Team shirt and wanted to thank me. I asked if she was on the team even though she was wearing a different shirt. She said no, because that was CTF (Children's Tumor Foundation) and she was on her local NF INC. board. Apprently, they are not working together and in fact are feuding. Have you ever heard anything so stupid? Shouldn't we all be on the same "team"? She made the comment that she has tried to talk to people from NF INC, but to no avail. She said, "look at leukemia and lymphona, you don't see them fighting". lol. Anyway, I don't get it. Just wondered if anyone else had heard anything about this.
Here's the link - http://dailystrength.org/people/212587/journal/1023198
Back on subject, it would seem that each forum location has its good points and bad. It's just a matter of figuring out where you fit best.
I sometimes think that it would be nice if most of the postings here weren't just new people introducing themselves. Why don't we talk more about treatments that work, ones that don't and why that may be case for you on either subject.
Then again, I don't deal with this the way the rest of you do to begin with, so that makes it more difficult for me to begin with.
I can only go by what I tell my wife, who is the one that does have to deal with NF. "While you may have it, it doesn't define who you are. There is a hell of a lot more to you than just that."
You are more than NF. You are the sum and total of your experiences, thoughts, and mindset, and it's what you make of yourself, no matter what you deal with, that defines you better than anything else in life.
Feel free to visit my son's caring bridge site.
www.caringbridge.org/visit/jayandre