Myotonia congenita is a genetic disorder that Amelia recently discovered she has been living with her whole life. The disease is characterized by an inability to quickly relax muscles after contraction, which can cause muscle imbalance, rapid fatigue, chronic pain, and difficulty with daily movement like climbing stairs or standing after sitting down.
For years Amelia knew something in her body was not functioning properly, but poor medical care prevented her from getting a diagnosis until adulthood. She experienced constant medical gaslighting, being told nothing was wrong or that she was too sensitive, and being misdiagnosed with fibromyalgia. It wasn’t until she found a doctor willing to listen that genetic testing was finally recommended, which uncovered myotonia congenita.
In this episode of the Major Pain podcast, Amelia tells us what it’s like to live with myotonia congenita. She also details her frustrating history searching for answers, and the feeling of finally uncovering the truth. Now that she finally understands what has been happening in her body all these years, she feels anger at her past treatment, disappointment that she wasn’t believed and sadness for the lost time. She is eager to share her story in the hopes people going through something similar will feel less alone.
Connect with Amelia online: https://msha.ke/helloameliagreen/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
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