I was diagnosed with congenital myopathy—multi-minicore disease—at five. To this day, I’ve never met anyone with the same condition, since it’s quite rare. This myopathy isn’t progressive; it causes generalized muscle weakness, making me tire quickly. I could never run, jump, swim, or engage in other fun activities kids do. For a growing child, this was significant. However, my stubbornness kept me from giving up. I always tried to join groups and participate in games, though not always successfully. Besides being stubborn, I’m also very proud, so I never let anyone see my struggles, not my friends, brothers, or parents. I never pitied myself; instead, I felt sorry for my brothers and parents for having me as their daughter, for being labeled as parents or siblings of a “damaged” person. This was particularly hard for me, marking some of the darkest moments of my life. Thinking about that kid now, all I wish for is to hug that child and tell her she is enough and loved.
Even during those dark times, science helped me cope. I enjoyed exploring encyclopedias with my brother, watching scientific TV shows, and later, researching my condition to better understand my situation, this also helped me to feel more in control of my life.
Soon after, at twelve, my spine began to curve due to muscle weakness, leading to severe scoliosis—three ribs had shifted into my hip. My orthopedic was unwilling to perform surgery, despite multiple hospital visits and preparations, due to the high risk involved. Fortunately, my parents sought solutions abroad and found one. This led to another dark moment when, at fourteen, I had to sign my surgery consent. I listened to the doctor explain the risks, including a 75% chance of death. My ears buzzed as I thought, “Let’s go home; I can’t do this,” but another voice said, “You can’t back out now; you must go through with it.” Thanks to my parents’ support and the surgeon’s expertise, I made it through an eleven-hour operation. Today, I’m here to share my story, and how science once again helped me get through dark times.
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- From Shadows to Sunlight: A Journey of Strength and DiscoveryI was diagnosed with congenital myopathy—multi-minicore disease—at five. To this day, I’ve never met anyone with the same condition, since it’s quite rare. This myopathy isn’t progressive; it causes generalized muscle weakness, making me tire quickly. I could never run, jump, swim, or engage in other fun activities kids do. For a growing child, this… Read more: From Shadows to Sunlight: A Journey of Strength and Discovery