For one, I am very rather sick of hearing about Autism and breast cancer. I am aware of the spectrum and more aware of my chest, thanks.
I'm also sick of people in general from my past, but that's another post.
I'm sick of being so angry at the world. If you are reading this, and I highly doubt you are (you are probably cruising other sites about more trendy disorders. Yep. I said it. "Trendy Disorders" Maybe I'll call this post that.
I've posted much too much about Neurofibromatosis and not enough. I'm sick of repeating myself to people who either have it themselves or have children who have it. These people are Experts (From this point on called NFperts) They don't need to be "Aware" of anything. They live it and breathe it.
So how about you? Ugh. I'm so sick to death of hearing myself type about Neurofibromatosis over. And over. And Over. And over again. I'm sick of defending it, I'm sick of explaining it. I'm sick of telling others how goddamn sick I am of hearing about the Trendiest Disorder in The World: Austism. We GET IT.
I hate very much to be rude or insensitive, but I get it. I GET it sucks. I GET it's hard. I GET WE NEED A """CURE"""". But for the love of the tiny baby Jesus, what about NF? NF is at least twice as bad as Autism. NF can actually kill you. It will kill me. Which is alright, I guess. I mean, God help me, I'm working hard on myself to get healthier to make my odds better. But who are any of us fooling? If you have NF you know you will die from it.
In a way, it's mildly reassuring. No surprises. But in a way, it sucks.
But I guess I'm getting ahead of myself.....
I sort of want to post facts about NF, but that's a little boring. But people are getting lazier and lazier in this time of technology, so what the hell. This is taken from The Children's Tumor Foundation Page. A terrific resource for anyone giving half a damn about NF.
|NF has been classified into three distinct types; NF1, NF2 and schwannomatosis. They are caused by different genes, located on different chromosomes.|
|·||NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born.|
|·||NF2 is a rarer type, occurring in 1:25,000 people worldwide.|
|·||While today there is no consensus, studies indicate that schwannomatosis occurs in 1:40,000 people.|
|·||The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined.|
|·||All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.|
|·||Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.|
|·||NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.|
|·||Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities.|
|·||NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.|
|·||The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.|
|·||NF2 brings on increased risk of other types of nervous system tumors as well.|
|·||NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.|
|·||Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).|
|·||NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that John Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.|
I don't know why I'm so bent out of shape about this. My NF is mild. But the thing is, I know people who have it so much worse than me. Friend's children who have gone through a year or more of chemo. Suffer chronic pain, risk loosing their sight and/or their hearing.
How can I put this to impact this disorder upon you?
Imagine yourself in a doctor's exam room. You are naked but for a flimsy paper gown.
The Doctor walks in and asks you what the trouble is.
"Well Doc, I've been having headaches, back aches and nerve pain. I don't sleep well. I found out I have high blood pressure, and I believe I felt a lump on the back of my neck."
The doctor looks at your chart. And he chuckles.
"Well" He says "I can't find a thing wrong with you. Maybe you should loosen that pony tail and watch what you eat."
You try to explain to him this "thing" you have. "Neurofibromatosis" You say, looking at your knees.
He brushes it off
"No, you aren't deformed" He laughs.
You find yourself getting angry. Angry at this man who is supposed to help and support you. And at least have HEARD of this disorder. At least enough to know the basics.......
My former Neuroligical Doctor treated me like that. I haven't been to any sort of neurological doctor since then. I am still so angry about it. For God's sake, my ob/gyn doctor seemed to know more about NF than her. Disgusting.
Can you understand now? Maybe even a little bit? This is the most common neurological disorder and yet no one, not even most doctors, have seemed to know about it. We have become our own NFperts. We have become advocates for ourselves, our children, for each other. We have to.
We have to stand up for ourselves and each other because no one else will. We support each other and love each other like family.
Which is rather cozy, until someone messes with us.
Anyway.......Where am I going with this? I just want awareness. I want some compassion and understanding. I want you to look into our stories and our lives and see the struggle and the thriving we do. Despite your ignorance, despite your apathy.
I hope this month you learn a little about Neurofibromatosis. It's not like it's going to kill you.