NF month has been crazy for us....last week, at my kids' school a teacher who saw my article in NW Woman magazine came up to ask me questions about it. Confused because she had heard that NF was 'The Elephant Man Disease' she said..."You don't look like you have Neurofibromatosis."
I just smiled and gulped down my extreme frustration that this disorder has been WAY misrepresented....and asked her if she wanted to see how NF affects me. She of course said "sure"....so I lifted off my shirt (something way out of my comfort zone...but this IS NF month after all)
My tumors were "hidden" under my shirt, but my attitude about having NF is something that has grown faster and stronger than any of my growths. This teacher looked at my back and front and raised her eye brows..."I had no idea", she responded.
And THAT my friends is what bringing forth AWARENESS is all about!
I know having Neurofibromatosis isn't something you want to go scream from the mountaintops, but that may be what it takes, to be heard.
Yesterday was awesome....I met with a Dr who is my children's allergist (I have no idea if NF and severe allergies are connected--but this Dr was VERY interested in hearing about NF) He told me he only had one other patient who has NF, and admitted he was totally clueless about this disorder.
He spent his lunch hour just sitting there asking ME questions and taking notes, I swear I wish I could have videoed this! I was some-what tongue tied --because I was excited about this opportunity to talk to someone who was actually listening!
NF Month is going to make this ripple affect....I just know it! Make a point to talk to someone about Neurofibromatosis! Turn it Around and TEACH!
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