Lately, life has been a lot more complicated for Kam Redlawsk.
Instead of independently living, the 43-year-old finds herself reliant on her husband of almost 13 years. Dressing and even eating are obstacles for Redlawsk, who said her degenerative disease has advanced significantly since the pandemic.
“When not engaging in a routine anymore, more weakness happens,” she said.
Redlawsk has lived with GNE myopathy likely her entire life. The genetic condition is a rare form of muscular dystrophy, where a person’s muscles weaken over time and can lead to total paralysis. Redlawsk’s disease didn’t start presenting itself until around two decades ago when she was in her late teens.
Redlawsk, who was a varsity soccer player and cross country runner for her high school in Michigan, began noticing she struggled to run fast, always having to catch her breath. She also started experiencing foot drop, which means she had difficulty lifting her feet while walking.
And then, one day, while she was playing soccer, she physically could not kick the ball.
“It became a very embarrassing thing for me because I didn’t know what was wrong,” Redlawsk said. “My parents thought I was lazy and needed to practice or run more. And I eventually got cut from the team because of this.”
As the issues grew more persistent, Redlawsk found herself being poked and prodded by doctors who thought she was making up her symptoms. One doctor even attributed the symptoms to having one leg shorter than the other, and for a year, Redlawsk wore a device to help with that diagnosis, which ended up hurting her more than helping.
Eventually, Redlawsk went off to Detroit College, where she studied automotive and industrial design. Here, she also decided to take her health into her own hands.
“I just started going to specialists and kind of figured out the system in terms of like, if I didn’t feel like a certain hospital was helping or taking me seriously, I would use them to get a reference to another one,” Redlawsk said.
Around six false diagnoses later, Redlawsk ended up at the Mayo Clinic and was diagnosed with hereditary inclusion body myopathy, renamed GNE myopathy.
Finally, she had an answer.
“It’s genetic and progressive, and at the time –and this was around 2004 when I was diagnosed – there were only 1000 people with this condition globally; it was that rare,” she said.
According to the National Human Genome Institute, there are currently 2,000 patients worldwide diagnosed with GNE myopathy and 200 in the U.S. But experts estimate there are hundreds of thousands of more people who just haven’t been diagnosed yet.
Because GNE myopathy is genetic, Redlawsk would have inherited the condition from her parents. But because she was adopted at four years old from Daegu, South Korea, after being abandoned as an infant, she had no idea she had the genes for this medical condition.
After the diagnosis, doctors told Redlawsk the condition is so rare that she’d likely never meet another patient like herself.
“My ongoing specialist team basically told me I had no future,” Redlawsk said. “They said I should quit college, and they would say things like, ‘you are never going to see treatment in your life.’
“So, for the longest time, for years, I just kind of dealt with that alone.”
Loss followed Redlawsk as her disease progressed. She went from having a wobbly gait when walking to using leg braces and a cane to using a manual wheelchair, and finally, in 2018, she started using a power wheelchair full time.
“As soon as you adapt to something, you have to readapt again,” she said. “So it’s been about 23 years of that, and you feel like you’ve traveled a trajectory of disability.”
Eventually, Redlawsk moved to California to escape Michigan’s harsh winters. Here is where she dove into advocacy for disabilities and people with rare diseases.
It all began after she met Daniel and Babak Darvish, both doctors and twin brothers with the same rare disease as Redlawsk. The brothers, well-known in the Persian Jewish community, which has reported a higher frequency of the disorder, founded ARM, a nonprofit dedicated to researching GNE myopathy. At ARM, Redlawsk worked pro bono using her design skills to create marketing materials.
“Then I started thinking what matters most is people hearing our stories. People are not going to respond to textbook definitions of diseases, or, you know, they won’t want to be inundated with disease news, and nonprofits and fundraising all day long, all the time. So that’s when I began blogging and writing about it,” Redlawsk said.
“I was the first one with my disease in the world to blog about it.”
And then, the designer in her started to realize that some people might respond and understand her advocacy more through visual representation.
So, Redlawsk taught herself to illustrate and began telling her story and the story of GNE myopathy through writing and illustrations in a daily column.
The stories Redlawsk tells vary, and today, she mainly uses Instagram to share her experiences. She shows her travel adventures that began after her diagnosis when doctors told her to “quit school and buy a wheelchair.”
First, she traveled to her home country, South Korea, specifically to the capitol, Seoul. She would eventually travel there again and take trips to Japan, Peru, France, Thailand, England, Mexico, and Australia.
She also frequently traveled around the U.S., and friends helped her organize Bike for Kam, a California coast bike trip from San Francisco to Santa Monica, where friends toted her down the coast in a carriage-like rig. The bike ride raised funds and awareness for those afflicted with GNE Myopathy, and in total, they raised $142,000 in five years.
Their last ride was in 2016.
Aside from her travels, Redlawsk found herself participating in extreme activities like skydiving and parasailing.
With social media, Redlawsk spreads awareness about everything from sex with a disability to being in an inter-abled marriage. When she’s not sharing online, she leads a patient group for people with GNE myopathy.
Her goal is to spread awareness about her rare disease and disability and work at dismantling the stigma surrounding disability.
“The stigma against the disabled prevents us from getting employment opportunities,” she said. “I’ve had a lot of discrimination myself, especially when I became really physically obviously disabled in a wheelchair.
“And I want people to understand that, so much of the difficulties that disabled people have is because society is so unaccepting, stigmatizing, and simplistic in how they look at us and our capabilities and abilities.”
When she’s not using social media to advocate and providing support for others with disabilities and her rare disease, Redlawsk is creating. Her latest creative venture :a children’s picture book called The Monster And Me, a story about a journey of struggle and acceptance.
She is doing as much as she can before complete, and total paralysis.
“I hope one day, a treatment will develop. But in the meantime, I’m more hopeful about just living my life more,” she said.
“And for me, this wasn’t necessarily a course that I predicted or asked for in life. However, I’ve learned it’s important to take the aspects you have, which will lead you to something else. So for me, even though I’m going to lose the ability to draw, for example, eventually, I know as a creative person, I’ll be able to creatively express myself in other ways, especially with more technology that’s developing.
“I try to stay focused on the aspect of when loss happens; I’m able to still express myself in another way by adapting and creating a new form of interest.”
Kam Redlawsk has been featured in multiple news articles and even a short documentary. You can find her website and blog here.