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Living With CMT - Lily's Story

“Lily, snap out of it.” These words pulled me back to reality. I was ten years old trying out for a competitive gymnastics team. Ever since I was little, I dreamt of becoming a gymnast. This fantasy clashed with the opinions of doctors and specialists regarding my health and abilities.

My dream was about to be realized, if only I could set aside my anxieties about my body and the world’s perception of it. I would soon realize being invited onto the team would become the smallest hurdle I would have to overcome. I now had to exist in a competitive athletic environment as a disabled person. Looking back, I see this as a perfect example of what existing in the world as a disabled person would be like. But this memory and realization are only one part of my journey.

My name is Lily Sander and I have Charcot-Marie-Tooth. I am originally from Colorado and am now living in Fort Mill, South Carolina. I am a ninth grader running my tutoring business, fighting local period poverty and trying to thrive as a person living with a chronic illness. I am passionate about social equality, learning, teaching, medicine, and CMT. Living as a disabled person is a big part of my identity, but it hasn’t always been.

Diagnosis of CMT

I was diagnosed with CMT at age four. This came after endless appointments with specialists incorrectly diagnosing me with every disease imaginable. Dr. Shy, a well-known CMT specialist finally brought the nightmare of investigating what could be causing an otherwise healthy four year old such problematic symptoms to an end. He along with his team hurled the words “Charcot-Marie-Tooth type 2e with HNPP” at a very confused child and family. We were then told that there was only one other documented case of CMT 2e in the world, a fact I regurgitated proudly throughout my childhood to anyone who would listen. Years later, I am now just beginning to understand the complexities of what those seven words mean for my body and life.

Life After Diagnosis

Living with CMT is a rigid dichotomy between prosperity and hardship. I have found incredible people, friends, and community through my diagnoses. I have also had the privilege to advocate for people with disabilities and raise awareness and funds to find a cure for CMT. My experiences with CMT have taught me invaluable life lessons and led me to many meaningful connections. In opposition, chronic pain, surgery, rehabilitation, bullying, heartbreak, and body dysmorphia rule an equal part of my life and journey with CMT.

Fortunately, support is available for those suffering. On my hard days, friends, family, and fellow CMT patients encourage me to keep pushing and to live my life to the fullest. Further, there are amazing communities online for people with all sorts of chronic illnesses and disabilities. Establishing and continuing to grow a support system is vital to dealing with the challenges having a rare disability such as CMT provides.

Life after diagnosis is much like life with CMT. A diagnosis is an immense privilege that many never receive, but it also shoulders unimaginable weight and grief that effects everyone involved. For my family and me, a diagnosis meant finding support and finally treating my symptoms. Although socially, a diagnosis meant I was irrefutably different, I was also able to have deeper connections with people who shared my experiences. I would now envision my future as uncertain, but I would also become excited for all I have to offer to my community and the world not in spite of CMT, but because of it. Of course this was not an easy change of my perception. It is an ongoing process that requires reflection, time, and mentorship.

A Word Of Encouragement

Keep fighting. Keep moving forward. Become the person you needed when you were younger. The world needs you and your story. Mine is beautiful, ugly, complicated, full of heartbreak and love, but above all, has taught me invaluable lessons and has provided me with precious memories and connections. Share your story. Share the memories you keep hidden away. You just might help someone else or even find yourself along the way.

“You are not a victim for sharing your story. You are a survivor setting the world on fire with your truth. And you never know who needs your light, your warmth, and raging courage.”

Alex Elle

Lily Sander is a 15 year old freshman at Nation Ford High School. She is originally from Colorado and is now living in Fort Mill, South Carolina. In her spare time she runs a tutoring business, travels, organizes charity events, collaborates with the CMTA, and pets as many dogs as she possibly can.

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