Lauren travels fearlessly despite her rare disease

"When I was born, I didn't cry and couldn't move my limbs. I spent my first two months of life in intensive care, at one point went into cardiac arrest and doctors didn't think I was going to live.

MEET LAUREN PIRES

When I was 10 days old, I had my first muscle biopsy. I have a three-inch scar on my leg from it which grew with me. For many years, I was very self-conscious about it, because to me it was a telltale sign of my disability, so I didn't even wear shorts in public until my late 20's. I had another biopsy at 12 and was misdiagnosed. They told me categories of what my condition could be, which ended up being wrong. With no diagnosis, I had nothing to research to learn more about my body or find community or support groups. My accurate diagnosis of central core disease didn't come until I was about 20 years old.

Central core disease (CCD) is a rare neuromuscular disorder characterized by missing mitochondria in muscle cells, making it difficult for the affected individual to convert food into energy and strength. Primarily manifesting as muscle weakness, CCD typically remains undiagnosed until later in life due to its rarity. CCD affects everyone differently, but for me, when I eventually did a strength test in my mid-20s, it was revealed that I have about 33% of the strength of an average person, leading to challenges in physical activities and daily functioning.

In school, I had trouble with physical activities that seemed normal and average to others. I was exempt from gym class in high school because I wasn't physically able to participate. Sadly, I had no diagnosis for it then, and so could not explain it to people, and neither could my family-no one knew why my muscles were weaker. The lack of a diagnosis was a significant challenge during my childhood which was confusing and frustrating, but I never really liked to acknowledge those feelings. I've always looked for the good in things, finding optimism and positivity as a survival mechanism. Focusing on things that made me happy or kept me going has been crucial, despite the many challenges and frustrations.