Tumors are just a very small part of NF (neurofibromatosis). It varies from person to person, day to day, year to year.
There is so much to write about it, that it is overwhelming to even to think about where to begin.
My spots are a big part of me. I don't need tattoos. I have this spolotchy coffee and cream colored blotches all over my body, in the oddest places; my back, my hip bone, the crease under my arm, my legs. All different sizes and shapes. I have a strong emotional attachment to them. Because it's a reminder: I have NF, and it is a strong part of me. It's a visual of why I am so quirky and weird and odd....Of why I worry about my mortality, about my future, future possible kids (if I make it that far). What will happen to me next year?
My NF is mild, and I am lucky for that. I know too many parents who has a child who has already undergone brain surgery to remove tumors. They have constant headaches, itching, vison problems, nervous system problems, severe learning disabilities, I could go on for pages to document every little thing NF touches.
This disorder is so devastating because there is no treatment, no cure, it changes constantly and from person to person. You cannot control it, or predict it. Only hope. Hope and MRIs is all we really have.
It's so important that word spreads about NF. It affects so many millions of people. It's more common than any neurological disorder and yet no one understands it or has heard about it.
Even doctors are seemingly clueless. I want people reading this to understand how frustrating that is. My former neurological doctor insisted that the bumps on my head were pimples, even though I -knew- they were little bumps that frequently occur on the head with NF. When I mentioned headaches, she sighted that "my pony tail is too tight." joking or not, NF isn't something to be taken lightly and with such ignorance.
It angers me that I was treated by such an ignorant doctor but what makes me more angry are the children and parents who are treated much worse than I am, going beyond ignorance and into total lack of care and stupidity.
I am sorry that I am unable to express NF properly. But maybe this will bring you to other NF blogs, or CTF.org
May is NF Awareness month. I have always respected other developmental disabilities, and things like Autism and rare things such as bilateral perisylvian polymicrogyri.
So I ask that you try and respect my neurological disorder, and spend a few minutes learning about Neurofibromatosis