Page 17 - 2020 Winter CMTA Report

From CMT Denier to Defier in

One Patient/Family Conference

BY JULIE STONE

y relationship with sure what I was getting myself
CMT has always been into, so I went super incognito!
really complicated. My The conference changed my
symptoms started when world. I learned so much about
M I was 6 and I developed CMT and found my amazing net-
foot drop. My mom had foot drop work of doctors, who have worked
and muscle weakness so we always really hard to make my day-to-day
thought this could be a possibility life easier. I also met CMTA
for me, but we never Development Direc-
talked about it and I “If anyone had tor Jeana Sweeney,
never really knew who really inspired
what was wrong. told me a year ago me with her amazing
When people asked I that I’d be out style, positive outlook JULIE, now 30, lives, works
always said, “It’s just and talking about and bubbly personal- and spreads the word
this weird disease that my disability ity. Jeana broke down about CMT in Seattle.
makes my muscles a lot of my stereo-
suck.” I kept all my I wouldn’t have types about what embarrassed to admit that I was
feelings buried and believed it.” people with disabili- once one of those people whose
pretended like it did- ties are like. minds I’m now working so hard
n’t exist. Although I had this This mindset had prevented to change.
“thing” I remained very active. me from accepting my CMT. I If anyone had told me a year
When I was 27, I was forced thought of myself as a fitness girl ago that I’d be out and talking
to confront my condition after who worked in fashion—I have a about my disability I wouldn’t
back-to-back injuries caused by my fashion degree and currently work have believed it. But talking about
foot drop. I decided it was time to on the women’s design team at its ups and downs has been so lib-
find out what was going on and Zumiez, and I’ve always been erating. It has opened up a whole
learned I had CMT! My doctor really active with diving and com- new world to me. I have a fitness
passed along the info for the petitive gymnastics. In my mind, I channel on YouTube where I
CMTA Patient/Family Conference wasn’t disabled because a disabled showcase fitness possibilities for
in Seattle in October 2018 and I person wouldn’t do these things. CMTers in my “One Class a
decided to attend. I wasn’t quite What ignorant thoughts! I’m so Week Challenge.” Thus far I’ve
done boxing, aerial yoga, Zumba,
cycling and pole dancing. I hope
to inspire other people to be more
open about their CMT and help
to break down the negative stereo-
types that are associated with it.
I’ve learned that by focusing on
what I have instead of what I don’t
have, I can be a fitness girl with
CMT who works in fashion.
Please check out my website
and start defying stereotypes with
me at www.cmtdefy.com. Stay fit
with me on YouTube by subscrib-
ing to my channel: CMTdefy.
Follow me on Instagram
@CMTdefy. h

WINTER 2020 THE CMTA REPORT 17