Monday, May 24, 2010


I remember first hearing the word Neurofibromatosis, I was 4 yrs old when I would run around the house repeating the word over and over. "Neuro-tosis Neuro-tosis". This did not make my parents very happy...they were dealing with my older brother becoming very sick and eventually blind because this disorder.
Neurofibromatosis, is a genetic disorder of the nervous system. 1 in every 2500-3000 births are affected with 'NF'. Half of those are from a spontaneous mutation....but not my brothers.
Mike was diagnosed with an Optic Glioma when he was 5 yrs old.
Examination of my brother's body, gave key indications that he in fact had NF. (Cafe au laits spots, auxiliary freckling, and soft fibromas growing all over his body) At first, doctors gave my parents no information how this occurred. In fact it would take years before this question would be answered.
My mother's own issues went undiagnosed until after she had children. Her Cafe au laits, were just "birth marks", the freckling....was just freckling, and the tumors were just moles.

I don't blame my mom, for not wanting to accept the reality of NF. It's scary, no doubt. I understand that my mom wanted to protect us from the pain, that this would bring us. But I have also learned that living in the closet, is an awful lonely place to be.

Mike is now 39 yrs old. Mostly blind, partially deaf, but a living testament that Drs do not always know the answers. No one can predict exactly how a disorder will affect them...not even the ones who claim they know everything.

Now that I am a mother, to children who have been diagnosed with Neurofibromatosis, I have an obligation to teach them about it. To let them know that it's okay to be scared.

I have stopped hiding from NF and all that having NF brings. I have become a stronger person now that I have accepted it. Now my focus to to help show my kids how not to hide.

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