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Meet Addie “The Face of the CMT Medical Journal”

 

In the Fall CMTUpdate, the feature article announced that HNF, in partnership with CaptureProof, is bringing innovative and powerful computer learning capabilities to give you the power to capture and document your CMT story with photos and videos to improve the health care you receive. We’re calling the project, The CMT Medical Journal. When it came time to film the tutorial videos for the project, we knew we wanted Addie to be “The Face of the CMT Medical Journal”. With coaching from Leslie Nelson, PT, Ph.D., Board Certified Specialist in Orthopedic Physical Therapy, and Assistant Professor at UT Southwestern School of Health Professions Department of Physical Therapy, Addie demonstrates each of the exercises in the protocol like a pro! 

Addie is 11 years old and lives in Austin, Texas. When she was 4 years old her parents noticed that she was walking oddly and after many doctor visits and testing she was diagnosed at 6 years old with CMT1A. We had a candid conversation with Addie about life with CMT and here’s what she told us, in her own words:

Having a CMT diagnosis is really interesting and rewarding. I have the ability to expand other people’s knowledge about CMT. At times CMT is difficult for me, my mom often helps me tie my shoes as I get ready for school. My friends run ahead of me and typing on the computer is challenging. My teacher often will type my notes for me.

There are many activities that I participate in that are complementary to my CMT: dance, swimming, and acting.

One thing I like least about CMT is the odd looks people give me when I use the elevator at school. Also, it’s sometimes hard to keep up with my friends. I do have some dedicated friends that offer to go down the elevator with me and hold books that don’t fit in my backpack.  

Recently, my parents applied for a disabled parking sticker so when we go to the store or outdoor music festivals we can park closer to conserve my energy. On days when CMT is hard for me, I use CBD medicine. I have it on my nightstand and in my dance bag that way I can apply somewhere needed and go on with my day.

One thing I found useful is a backpack on wheels so I can roll it in school. My bike is a pink  three-wheeler(my friends are super jealous)

Explaining CMT to my friends is hard because when I’m just standing, I seem normal, but I try to explain that this disease makes your hands & feet hurt.

My hope for the CMT Medical Journal project is that once in a million years there is a cure for CMT so that other people with CMT can have the cure. My case is not as severe. I’m lucky!

Thanks, Addie. You are a superstar! 

If you want to create a visual medical journal that will capture, in sensitive detail, the daily struggles and challenges of living with CMT, please let us know that you are interested by joining the waiting list by emailing [email protected] We’ll be in touch with an invitation to participate when there is an opening.