CMT Awareness Month
Graphic by Lenka Vodicka
I am very aware of CMT. I am aware daily as the symptoms flare up. I know how CMT works. I know why it’s named CMT- after the doctors that discovered it. Charcot and Marie and Tooth all earned their names on the disease at the same time. Why, Doctor Tooth, why couldn’t your name have been anything else?!? Anything! Smith or Laurent or Delacroix? Why tooth! When CMT has nothing to do with teeth. Grrrr. One of many challenges living with CMT. There is q phrase of Hereditary Neuropathy which is sometimes more helpful to explain to doctors what I live with daily.
I do not need CMT awareness.
However, when I go out into the world, CMT becomes a Great Mystery. “You have whqt?” “How do you spell that?” “What’s wrong with your teeth?”
We need more than a day. We need an entire year where people recognize our disease. Where they understand the basic challenges of our nerve challenges, a degenerative disease with no direct treatment and no cure.
In past years, I’ve posted every day in September. Not sure I will manage that. But I’ll share more about CMT and my life with CMT. It’s no small feat, living with CMT.
That’s the ongoing goal of awareness, to share stories that reach people. So they say, “I know someone with CMT.” Because now you know me.
