If you don’t know Kam Redlawsk, her story is certainly unique. Born in South Korea and abandoned at birth, Redlawsk was adopted from an orphanage and brought to the United States by a Michigan family at age four. Her childhood included fun adventures and a passion for soccer.
Redlawsk has GNE myopathy (HIBM) a very rare genetic disease characterized by slow, progressive muscle weakness, primarily in the muscles used to perform daily physical activity with no proven treatment.
“From the beginning, I had to take control of the experience and learn how to navigate a disease that so few people in the world knew anything about,” says Redlawsk. “How do you live your life when you know one day, you’ll be immobile? For me, the answer is as an advocate and an adventurer.”
After the diagnosis, Redlawsk traveled back to South Korea for the first time. Growing up surrounded by an all-white family, she wanted to explore her biological culture; she learned Korean cooking and traveled to Japan.
A couple of years after her diagnosis, she connected with two brothers who also live in California and have GNE myopathy. Together they have worked to raise awareness and unite people living with the disorder around the world.
“I’ve learned that people respond to stories, and I became the first person in the world to blog about the disease,” says Redlawsk, who shares her journey on Twitter and Instagram. “I know how difficult going through a rare disease is, so it was important for me to share my story so that others don’t feel alone.”