Tell us about yourself?
I’m a 47-year-old mom, wife, blogger, social worker, empowerment speaker/educator and fashionista. Besides hanging with my family, I love entertaining, traveling, attending my monthly book group (more for the wine than the books) and thrift store shopping.
I have the slowly progressive CMT type 1A. My ankles were completely fused the summer before my freshman year in high school. I had a lot of challenges with body image and depression growing up, mostly due to having a progressive neuromuscular disorder that no one understood and could help me to understand.
Things took a big turn in my late twenties when tripping on sidewalks, became a daily thing, I felt no choice but to begin wearing bi-lateral (two) leg braces daily for foot-drop and foot weakness. Over the past 5 years, my hand neuropathy has worsened and I can no longer perform many fine motor tasks like small buttons, gripping with my fingers and buttoning.
How has CMT challenged your behavioral health?
I struggled with self esteem and body image as a child and young teenager. At age 15, I attempted suicide and was sent to an in-patient treatment center for many months. Having a progressive disease that no one had ever heard of definitely contributed to my problems and eventually I cried out for help. After years of therapy, I found self-acceptance and learned how to better cope with having a disorder that I can’t control.
Today, I try not to focus on CMT and instead, put my energy towards living well with it. I work daily to empower other women with various conditions. My goal is to use my fashion & lifestyle blog/website, Trend-Able.com to help others look and feel their best.
What is the one thing that you hope the FDA learns about CMT?
CMT is different for everyone even in the same family. For example, my now deceased mom was not able to walk well or pull up her own pants without assistance. My sister who has CMT, doesn’t wear leg braces, but has toe problems and is always in pain. Her legs are thin and chicken-like and she has bad scoliosis due to CMT. I don’t ”look disabled” but have the worst balance of all three of us and fast progressing hand neuropathy. My teenage daughter also has CMT and does not currently need leg braces. She has nerve pain at night.
What do you hope attendees will take away from the Voice of the Patient Weekend?
I hope they leave with tangible tools for living their best lives with CMT. I also hope we can walk away with a timeline for when we as patients will have access to the drug treatment for CMT1A.
Anything else you’d like to share with the CMT community?
I’d like to invite the CMT community to visit Trend-Able.com for ways to navigate real-life social scenarios and AFO fashion tips. http://www.trend-able.com
CMT runs in my moms family and unfortunately I have it. I have passed it to my children and one granddaughter also has it. I knew something we different growing up because I could not jump and running was difficult. I am 65 and was Diagnosed at 35. My hands have no muscle left in the but it does not stop me from doing things that need to be done. I have to except thing I cannot do. Walking barefooted is almost impossible. My balance is really scary now so I think about every step I take. My ankles are fused and my big toes hang down which makes me have drop foot. I trip and fall a lot so my knees are scared but only one broken bone my finger. I have AFO’s but refuse to wear them. I feel like that is giving up my lifestyle. I wear rocker shoes which help me be able to feel some what normal. There are several styles out there and my life would not be the same without them. I just wish we could design them to not be as tall and designed to help with our balance. I know I just have to continue to be active in my yard work and thinks that keep me going. I’m not a quitter and will continue living an active live. I pray we get a cure for this younger generation who suffer with CMT.