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Many people may not be familiar with Charcot-Marie-Tooth disease (CMT), despite it being among the most frequently inherited neurological disorders. CMT is a collective term for inherited disorders that lead to nerve damage, primarily affecting the arms and legs. Similar to many invisible illnesses, awareness about living with CMT is incredibly limited.
So, how did I learn about CMT? Three years ago, while searching for inspiration for my countless Weight Watchers journeys, I discovered a YouTube channel run by a woman named Sarah. Although her main focus wasn’t CMT, Sarah openly shared her journey with the condition, which greatly inspired me.
In recognition of CMT Awareness Month, Sarah recently shared her unique experience with CMT in an interview. Her story is remarkable, starting with a misdiagnosis that ultimately turned out to be a blessing. Sarah discusses how she advocates for herself and wishes to help others with CMT embrace acceptance and adaptability in their lives.
Understanding CMT
Sarah’s journey with CMT is unlike many others. Initially, doctors misdiagnosed her with Spinal Muscular Atrophy (SMA) when she was born. Given the limited understanding of CMT in the 80s, her family was left confused when Sarah didn’t develop like other infants.
“By chance, my family discovered my CMT diagnosis,” she explains. “My dad was at a podiatrist appointment when he was asked about any neurological conditions in our family. He mentioned me, and that led to the right diagnosis.” Thankfully, her actual condition was not SMA, but the infant-onset CMT came with its own set of challenges, such as not crawling and learning to walk until age three.
Despite these hurdles, Sarah emphasizes the silver lining: “Having to learn to walk using aids like a walker or braces felt like an opportunity. Many people with CMT begin to struggle around my age (34), but I’ve chosen to stay proactive.”
How does she stay ahead? Even with limited arm function, Sarah has found ways to lift weights, participating in adaptive workouts like Body Pump and Lift 4 by Beach Body. “I might not participate like everyone else, but I still feel strong! I started with 1lb weights and have significantly increased my strength.”
What to Know About CMT
Adapting to life with CMT presents unique challenges. Simple tasks, such as opening jars, can be difficult. “I constantly look for ways to adapt so that I can do things that others may take for granted,” she explains, recalling how her sister-in-law was surprised to see her navigate tasks differently.
For those unfamiliar with CMT or similar chronic conditions, awareness is crucial. Sarah wants others to understand, “On the other side of acceptance lies the ability to adapt. Living with CMT doesn’t mean life can’t be enjoyable. It’s important to honor your body; chronic fatigue is real, and even showering can be exhausting.”
Sarah exemplifies how to not only survive but thrive with CMT. She operates a YouTube channel, provides wellness coaching, and moderates a community dedicated to healthy living. Awareness of CMT doesn’t have to be limited to just September; educating oneself can spark important conversations about this condition and others that often go unspoken.
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Summary
In summary, Charcot-Marie-Tooth disease is a commonly inherited neurological disorder that significantly impacts those who live with it. With limited awareness surrounding its challenges, individuals like Sarah are paving the way for greater understanding and acceptance. Their stories highlight the importance of adaptability and resilience in the face of chronic conditions.