I have numerous, too many to count, neufibromas on my chest, stomach, back, and neck. I have 2 children and each time I was pregnant, more growths appeared on my stomach, neck, and face. I, like others, had many removed, only to be left with a scar or to have it grow back. Just recently my dentist found a lump under my tongue. He paniced and sent me to a oral surgeon. Yesterday I had it removed. The surgeon was very supportive and offered to laser quite a few off my neck. I jumped at the chance, because those are the ones that have bothered me the most about my appearance. It is frustrating however, that the insurance companies usually consider such surgery, cosmetic... As if it's not necessary. It may not medically be necessary, but psychologically it's very necessary to feel good about yourself.
I am very frustrated about the lack of knowledge of the general public and the medical profession. Many doctors I talk to, know very little about NF-1, or what to do about it. I gave many copies of information to my family physician, so he could effectively treat my high blood pressure, probably caused by NF. One doctor said, "Well it hasn't caused you any medical problems, so I wouldn't worry about".. but I feel that is wrong. Maybe I haven't had major medical problems, but I have had major phsyciological and emotional trauma due to this disease. My self esteem is a constant thing I need to work on and build up. People stare. Children are SCARED of me. My peers in school growing up where cruel. There are major problems with this disease, not just the medical.
I have been blessed with a husband that loves me, even with the lumps. We have 2 beautiful boys. The youngest is showing the signs now of NF. I work as a computer programmer. I am very active in my church's education program. I love working with the children and they seem to accept me, for me. Although some of the dreams I had, like being on stage as an actress or singer, probably won't happen, am I happy for what I've received so far in life. I want to be able to educate more poeple about this disease. It's more common than people realize.
Rally together folks.... We are not the freaks that people try to make us. We are human beings that love and want to be loved. YOU ARE SPECIAL... Don't ever forget that or let someone tell you otherwise. Every day I look in the mirror, I hate this disease, but I have to remember how blessed I am. Remember that - YOU ARE BLESSED !!!
Janelle / added November 1998