Rare Disease Month
- Olivia Dennis
- 4 days ago
- 2 min read
February is Rare Disease month! 🦓💚
I have a rare disease called Charcot-Marie-Tooth (CMT). I wanted to do the challenge by @chronicloveclub to share a sign of me with my rare disease.
CMT is a neuromuscular disease and a hereditary motor and sensory neuropathy that attacks the peripheral nerves, causing muscle weakness. As the nerves are damaged and muscles atrophy, the hands and feet can change, making it hard to walk and hold objects. Other symptoms include nerve pain, fatigue, balance issues, foot drop, numbness and more.
I have the subtype CMTX, caused by a mutation in a gene on the X chromosome of my mom.
When I was five or six, I often complained of leg and foot pain. My doctor said it was growing pains. At the time, it seemed to make sense, but it wasn’t the real cause.
By nine, health issues increased, starting with stomach problems. A doctor asked me to walk and noticed I was struggling, suggesting it might be neurological. That idea was dismissed, and I was passed between doctors until my GI specialist referred me to Children’s Hospital in Atlanta. At fourteen, I began experiencing nerve pain and was sent to the MDA Clinic. After testing, doctors found a type of neuropathy. At sixteen, genetic testing confirmed I have CMT1X, and we realized my mom also had CMT.
Receiving this diagnosis was overwhelming. Around the same time, I was diagnosed with other chronic illnesses.
Since then, I’ve worked on improving my walking through AFOs, therapy, treatments, and ongoing care.
CMT affects my balance, strength, and daily life, but it has also helped me grow. God has been my strength through it all. To anyone facing a rare disease: you are not alone, your story matters, and there is always hope. ❤️
Check out my Instagram post below to learn more about CMT! Let’s spread awareness!
🤍🤍
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