Hi, my name is Noa Sumner! I am 19 years old and I was diagnosed with Charcot-Marie-Tooth 1A (CMT1A) disease when I was in 5th grade (around 10 years old). 

What is CMT? 

CMT1A is a genetic condition that affects the nerves in one’s body, making it difficult for the body to send signals between the brain and muscles. This can lead to loss of muscle function and loss of sensation primarily in the arms and legs. Living with CMT often requires ongoing care and support to maintain mobility and manage symptoms and there is no cure…Yet.

What is your story with CMT? 

As a young child, I would walk toe-first, this is a sign of CMT at an early stage. Although, none of the doctors could diagnose me at the time. Then, in fifth grade I began to walk differently than other kids and often tripped because I lost my footing. I was diagnosed with CMT in 5th grade. To me, that's all it was; a diagnosis. Until I started feeling fatigued after standing, pain after walking, and continuously tripping and getting hurt. My mom likes to make this comparison; for someone with CMT1A it takes 4x the energy to do something as it does someone without it. For example, if I were to walk a mile, for me it would feel like 4 miles, and for my friend without CMT, it would simply be a mile. Now hopefully you can understand how exhausting this disease is. 

Then, in 6th grade, I had my first surgery. Both feet received surgery at the same time; it was experimental at the time, and only a tendon surgery, so easy recovery. I had a cast on each foot, and could walk on the casts after a week of crutches. The pain was not too bad since I was young and owned it. 

Throughout my lower educational years, I have had several surgeries to keep myself functioning. Since this is a chronic disorder, meaning it will progressively get worse, the surgeries do not cure it, they merely help keep me functioning. I will need more surgeries as I continue to grow and my muscles continue to weaken. 

I am currently a student at UC Davis where I am studying to become a disability activist or lawyer. I wear my casts (last photo shown above) as much as possible, even though I get the occasional curiosity looks :) 

My goal is to raise awareness so my peers and myself can work hard to bring a cure. 

Thank you