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....
First I want to say, I am NOT recommending this, and please don't anyone else go out and do this. But does anyone else get so frustrated with these tumors and docs not wanting to deal with us that you have wanted to cut them off yourself? Am I weird that way? Sometimes I just look at the ones on my chest and shoulders and I think I would do anything to have them gone. A friend was telling me I needed to change my hairstyle, that it was frumpy. I know he was trying to be nice, but it has really put me into a tailspin for some reason, and I was just thinking, My hair, what in the hell difference does my hair make! He thinks I should get a hairstyle that "frames my face", oh yes just what I need, a frame for my tumors!! And I started thinking, if I took a razor to my face, would they say stiching it back up would be "medically necessary"? or not. What do you think.
I have thought though because a lot of mine are really small that I would rather have burn scars then have to see a bunch of little bumps in the light but i would never consider burning myself for real.
I feel for you because I know what is like to hate yourself for something you can not change.
Maybe doing something else good for you would help you feel better?
I have never seen a picture of you, but I bet they are not as bad as they seem?
I hope you would never really consider hurting yourself, but if you feel down message me and we can chat