When I was 7, I was diagnosed with Type 1A Charcot-Marie-Tooth disease1 at Cleveland Clinic Children’s by Dr. Moodley2. 

CMT is a genetic disease, which my father also has. I walked on my toes and couldn’t run like most kids did. It was very visible that I was different. As I got older, the pain of walking grew worse. I tried every form of support possible, from braces to a wheelchair. The worst were walking canes, which I attempted to use for balance. I needed them because I would fall down all the time, but I hated them, especially in middle school. That’s an awkward age anyway, and I felt so embarrassed. 

I ended up having complete reconstruction of both feet. Dr. Goodwin3 performed the surgeries, and I trusted him from the first day I met him. 

One day, you have feet that barely help you get by and cause you pain; the next day, you wake up with brand-new ones. My feet look 100% different and I can walk, which is so cool! Some of my friends with CMT will always be in wheelchairs, so I realize how blessed I am to have had these surgeries. 

Sometimes people feel sorry for me, but I see this disease as a privilege. It has taught me how to handle life. 

 

After 10 years of physical therapy, Erin Black walked across the stage at her high school graduation. She organized a charity event that raised more than $20,000 for the Charcot-Marie-Tooth Association. 

Erin Black, a young woman, wearing a purple cap and gown, smiling at the camera in a graduation photo, with a pink sunset behind her

Photo: Samm Foster

Notes

  1. CMT is a group of nerve disorders that can cause deformities in the feet, hips and/or hands.
  2. Manikum Moodley, MD, is a pediatric neurologist.
  3. Ryan Goodwin, MD, is an orthopaedic surgeon. 

Erin Black won't let a neurological disease stop her from doing what she loves.