Community Spotlight: Kam Redlawsk
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.
“At 16, I started to notice physical differences. I had a foot drop, and my gait was unusual. I thought I wasn’t trying hard enough in soccer,” says Redlawsk. “There was a disconnect with my body that continued to deepen. It was the start of a multiyear process that led to five misdiagnoses. In 2004, at age 26, I finally received shocking news.”
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.”
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Now 44 years old, Redlawsk’s disease has progressed considerably. She can’t walk or stand. During the pandemic, she lost the ability to lift her arms and move her fingers. She can no longer drive or feed herself. Most recently, she’s started to experience neck drop, and nothing can stop the disease progression.
“Disability is the only identity that any of us can become a member of at any time. The more self-acceptance you have, the more empowered you will feel,” says Redlawsk.
Over time, as her abilities changed, Redlawsk had to adapt her activities.
“My target is constantly moving. I try to find new ways to fill the losses,” says Redlawsk. “When I lost the ability to cook, I started illustrating. There is always something more. It is up to us to be the seekers and find what’s next. You need to face the emotions and move on and know there is more out there.”
Redlawsk offers three pieces of advice to those who may be struggling.
“Number one, you can’t keep it inside. Number two, you need to find your community. This helps so much. Number three, it is easy to think of ourselves as living a certain life, and if you are not there, you are out of the game.”
“The journey to becoming an advocate was unexpected and unplanned, but I’m grateful to share and impart some knowledge about my disabled journey so that others will know they’re not alone or less than just because their body or mind doesn’t fit the typical spectrum. We are all different, and our differences are our greatest contribution to others around us.”