It wasn’t obvious at first. A soccer player, her coordination worsened, she ran a little slower. A couple of years later, she had trouble walking up the stairs and felt as if her feet were dragging on the floor.
Kam Redlawsk thought she was clumsy. After all, who hasn’t tripped up the stairs?
Doctors declared six different diagnoses before deciding it wasn’t just a lack of gracefulness. Redlawsk had a rare disease called Hereditary Inclusion Body Myopathies, or HIBM.
HIBM is a rare genetic disorder that causes progressive muscle wasting and weakness. Muscle degeneration usually starts between ages 20 and 30.
First, she used a cane, then leg braces. Now, Redlawsk, 32, depends on a wheelchair more and more. In the past year, since moving to San Francisco, she’s noticed the progression of her disease.
“I’m using a chair to go out in general public,” she said. “I wasn’t doing that in L.A., [I was] walking to the door, to my desk.”
Her condition slowly progressing, Redlawsk reflected on how things have changed since her initial diagnosis.
“Looking over the past 10 years, it’s so weird to see myself, remembering when I was walking, to now,” she said. “It definitely is very hard. … You know the prognosis when you’re living it, having a hard time opening a straw, lifting a hair brush.”
But Redlawsk, who just finished a skydiving trip for her birthday, wasn’t about to let a disease hold her back. She became involved with ARM (Advancement of Research for Myopathies), a nonprofit organization dedicated to finding a cure and increasing awareness of HIBM.
She dreamed of a project that would raise awareness beyond the ARM community. Redlawsk and two of her friends—Andres Garza and Viet Nguyen—put their heads together, and Bike for Kam was born.
Bike for Kam is a grassroots effort to raise awareness about HIBM and encourage people to donate to ARM. Garza, of Redondo Beach, and Nguyen, of Lakewood, along with other bikers, will ride along the coast from San Francisco to Santa Monica April 25-29. The fundraising for ARM has already begun and they’re hoping to hit $20,000. Potential rides in San Diego and Michigan are also in the works, Redlawsk said.
“We’re hoping that the story will touch someone,” she said. “The more people we can get to talk about it, the more successful it can be.”
Nguyen said he and Garza kicked around the idea of a long bike ride, but it wasn't until Redlawsk stepped in and suggested an HIBM angle that the fundraising project began.
"Whatever happens will all be part of the adventure," he said. "Knowing we're doing this for Kam really takes away any intimidation of the 500-mile distance."
Garza's past efforts in the fight against HIBM weren't making enough of a difference, he said.
"This project made me feel like we could make a real contribution, one that could help Kam's odds in the fight," he said.
Nguyen hopes the ride and Redlawsk's story will inspire others to support the cause.
"It is possible to cure and treat HIBM," he said. "Funding and awareness is what holds it back. ... It's not how much each one is donating, it's just that someone is donating."
Redlawsk considers those with HIBM to be underdogs compared to others with well-known conditions. Categorized as a rare/orphan disorder, the disease affects fewer than 200,000 people, but Redlawsk is certain a cure can be found with the right support.
"We can cure this," she said, betting on the fact that people "really do like the underdogs."
Things have certainly changed for Redlawsk in the past year.
“I’ve kind of had to accept the fact I’m going to have to go into the chair,” she said.
But knowing she can do something to help is motivation enough to keep going and help others affected by HIBM, she said. So, at the end of the month, with the help of her friends and supporters, a special bike ride will take place. Riders will end up in Santa Monica after they "bike for hope."
And though her disease is progressing, Redlawsk plans to push back—hard.
“What you are before you become disabled … you’re still that same person,” she said. “I’m still the same person. … I still care about living life, if anything more.”
For more information on how to donate and get involved, click here.
