this is brad dowling. he has NF and this is me, i have NF.

we aren't alone. there are many many of us. more of us than those with MS and CF and MD combined. it's time to get the word OUT THERE. we aren't contagious, just as cystic fibrosis or multiple sclerosis or muscular dystrophy isn't contagious. it's a genetic screw up. the luck of the draw, life, that's all it was, life. but it's a life sentence and you can help. we need more research and we really need more understanding out there. some of us rarely venture out because of the stares of people that just aren't sure why a lot of us look as we do. some of us have learning disabilities and are labeled as slow or worse yet, lazy and stubborn. some of us are clumsy or are in pain from things going wrong inside of us. things unseen but playing havoc with different body systems. a lot of us have issues with depression, sneaky nasty chemical imbalances.
when i was a teenager, years and years BEFORE i was diagnosed i was asked to do a lady's hair. a wash and set on a woman in her early sixties. as i ran the water over her head and started to lather in the shampoo, i discovered that her scalp was simply covered with pea sized hard bumps. i didn't say anything and washed her hair then tried as best i could to set it in rollers. i wish she would have said something. i wish i would have had the courage to ask. i know now what it was. i guess she did, perhaps not. maybe she hid it just as an elderly man that lived a few blocks from me did for his whole life. i never met him. i never saw him. his only friend was the older man that lived 3 houses up from me. bud would go and bring him what he needed. bud said that his friend never left the little old wooden farmhouse that his family owned for years. he lived alone. i am not sure for how long. bud said one day that this man had lumps and bumps over his whole body and was too embarrassed or scared to go out. he died a few years before bud and the old white farm house sits empty but i think of that unseen man every time i pass by.
may is NF awareness month. may is almost over but for us and for those to come may never ends. we are ALWAYS aware of it. whether we choose to call it a disease or a condition or a fucking pain, doesn't matter really. it is what it IS. we'd like more people to know about it and understand and HELP.


oh, and as an incentive, a little something to think on- 50 percent of the time NF just pops up in a family with no history of it and this- is a neat thing to ponder- scientists think that if and WHEN the get a real handle on this it very well could lead to a CURE for cancer! makes sense when you think about it.

so, think about it. thanks.