The symptoms first appeared during Kam Redlawsk’s junior year in high school. Fatigue hit the varsity soccer player more often. Her gait became wobbly. And she was suddenly having trouble climbing stairs.
Something drastic was happening to her body. “It is a bizarre situation,” recalled Redlawsk. “One day you are running and the next day you’re not.”
But the teen’s doctors couldn’t offer any clear-cut answers. Soon after Redlawsk graduated in 1998 from Anchor Bay High School in New Baltimore, Mich., she visited a series of local hospitals, saw neurologists and sought advice from doctors at the University of Michigan’s hospital in Ann Arbor.
While some doctors said she displayed symptoms of multiple sclerosis, a degenerative disease of the central nervous system, others diagnosed her with polymyositis, an inflammation of muscles, and had her on steroids for a year-and-a-half.
Meanwhile, a rare disease continued to eat away at her muscles, first attacking her legs and then spreading to her arms, hands and neck. Redlawsk, who by then was studying automotive design at the College for Creative Studies in Detroit, felt increasingly weaker and began using a cane.
Finally in 2004, a visit to the Mayo Clinic in Minnesota provided answers. During her final year in college, Redlawsk was diagnosed with Hereditary Inclusion Body Myopathy (HIBM), a group of rare, incurable genetic disorders that causes progressive muscle deterioration and weakness.
By then, Redlawsk had received so many different diagnoses that the final one wasn’t devastating.
“Well, OK, what do I do now?” she asked her doctors.
The problem: There was no cure and little information about the disease, which is estimated to affect 1,000 people worldwide. Doctors predicted Redlawsk’s muscles would continue to deteriorate and possibly leave her severely disabled. Most patients with the disease are confined to a wheelchair within 10 to 15 years. Redlawsk was encouraged to quit college and start using a wheelchair.
Neither were options. Instead, she graduated in 2005 with a degree in industrial design, and wore braces on her calves to keep her feet stable so she could continue walking.
A year later, Redlawsk moved to Los Angeles and landed a job at Mattel, where she currently works on designing games and toys, including the company’s recent Speed Racer collection. The disease still significantly disrupted her life, and Redlawsk searched for more information about treatment. She finally stumbled upon the story of the Darvish brothers, both doctors with HIBM based not far from her apartment in West Los Angeles.
In 2000, Bob and Daniel Darvish founded Advancement of Research for Myopathies (ARM), a nonprofit organization in Encino, Calif., that raises funds for research, provides support for HIBM patients and spreads the word about the disease. At the time, the organization worked primarily with members of the Iranian Jewish community, where the disorder is more prevalent and those diagnosed are even stigmatized.
The Darvish brothers, diagnosed with HIBM in their late 20s while in medical school, were stunned when Redlawsk reached out in July 2007. “We’re surprised when any patient contacts us because we’re dealing with such a rare disease,” Daniel said.
The doctors conducted genetic tests on Redlawsk, a Korean-born adoptee, and confirmed that her birth parents were carriers of the gene mutation and passed on the disease to their daughter.
Redlawsk, who was adopted at age 4, knew nothing about her biological parents except that they had abandoned her at a hospital in Daegu, South Korea. Born with a cleft palate, Redlawsk also contracted measles and chicken pox when she was a month old. After recovering in the hospital, the infant was taken to an orphanage where she lived until she was adopted by Rodney and Sandra Redlawsk of Chesterfield, Mi., in 1983.
As a result of her diagnosis, and also after meeting more Koreans than she ever had before during college, Redlawsk said she felt a growing desire to reconnect with her birth country. So in 2003 she traveled to Korea. During her trip, she visited Seoul and Wonju, but a typhoon prevented her from visiting the orphanage in which she was raised. Still, the trip was transformative. Redlawsk felt an innate connection to Korea and didn’t want to leave.
“I don’t usually categorize myself as an ethnic group, or any group for that matter, but I definitely felt some sort of connection,” recalled Redlawsk. “It was unexpected and I can’t describe why, but I felt like I was visiting a part of myself.”
Redlawsk has not yet taken steps to find her birth parents, though knowledge of the fact that they were carriers of the HIBM gene mutation has made her more curious about them. She sometimes wonders if they know she has this disease.
Redlawsk’s meeting with the Darvish brothers became more than a diagnostic visit. With her design experience, Redlawsk offered to put together for free a media campaign for ARM that included a new logo, brochures, templates, a documentary and a website. Her involvement, as creative director and member of the board of directors, would help the organization broaden its reach beyond the Iranian community and put a different face on a disease that has also affected those of Korean, Japanese, Middle Eastern and African descent.
Since her exposure, a number of HIBM patients have contacted Redlawsk with their stories. Redlawsk’s objective from the beginning was to let patients know that it was healing to talk about their experiences and that ARM would be there to spread their message. “I see my experience as a way to help and talk about it as much as possible,” she said. “What’s the alternative? Get worse and not say anything?”
This month, Redlawsk has plans to visit Tokyo and Kyoto to meet a cluster of HIBM patients. She has yet to hear from another patient of Korean descent and, in fact, has been told she is the only known Korean in North America diagnosed with the disease.
Spreading word about the disease and finding other patients is crucial to getting the attention of medical professionals and companies with research funding mechanisms. HIBM is considered an “orphan disease” because researchers and pharmaceutical companies find little reason to invest resources in such a rare disorder.
“She is certainly a positive role model when it comes to this,” said her boyfriend Jason Hazelroth. What drives Redlawsk, he says, is her empathy and inability to just sit and do nothing.
Daniel Darvish refers to her as an inspiraton and a branch for his organization to reach other people with the disease, especially Asians.
Meanwhile, with no options of treatment, medication or physical therapy, Redlawsk’s health continues to deteriorate. HIBM patients have a range of outcomes; some in their mid-50s are bedridden, while others are wheelchair-bound with abilities to talk, eat and use the bathroom on their own.
“I just feel weak, tired and soreness because of the way I have to compensate,” said Redlawsk, now 29. “I feel my mind and drive are a lot faster than when I’m moving. I hate being dependent on people.”
Excessive physical activity, including running, could damage muscle tissue irreversibly. The weakened muscles in her legs make her walking gait wobbly and unstable, and the slightest sidewalk imperfections can send her off balance.
“I’m aware I have limitations, but limitation is a funny word,” she said. “Physically, it’s harder … but it’s been very eye-opening.”
There are many days when Redlawsk struggles with the disease. Mundane tasks like uncapping a tube of toothpaste, typing or rolling over in bed have become much more difficult. Sitting, standing, sleeping and walking have become uncomfortable, and at times painful. When she falls down, it can take her up to an hour to get back up on her own. “You lay there and think, ‘This is so sh-tty,’” she said. “Even that’s a big ordeal.”
Coping emotionally with the disease can be even tougher because the disorder is progressive and affects the patient slowly. Those with HIBM are constantly trying to adjust with the changes that occur in their bodies, Redlawsk said. Even her family members in Michigan, which include her parents and three brothers Cole, Ryan and Josh, have a hard time fully grasping the disease and its effect on her body.
Strangers, for the most part, are willing to help her when she stumbles or takes a fall in public, though some are left bewildered. She recalled how one first-generation Korean woman working at a gas station in Los Angeles hunkered behind a cash register when Redlawsk fell to the floor and called out for help. The woman ignored her. Redlawsk then dragged herself up from the ground. She didn’t say anything to the lady, but never returned to the business.
“During those moments of hardship, I am caught off guard and it feels like I am being told for the first time that my body is deteriorating,” said Redlawsk.
The petite woman, whose leg braces and cane support each painful step, misses being able to have a pick-up-and-go lifestyle that doesn’t require planning out her steps throughout the day. She misses running, jumping and expressing herself through her body.
Her boyfriend, whom Redlawsk has known since college, has become her emotional and physical support system. Hazelroth, 28, is also a Korean-born adoptee from Michigan who has seen Redlawsk’s health decline over the years. A concept artist who designs video games for Pandemic Studios, he has increasingly taken a larger role in helping his girlfriend with everyday activities, including climbing stairs. “I’ve made it clear that I’m here to make it more comfortable,” he said.
Further deterioration could put Redlawsk in a wheelchair, but she’s optimistic that she’ll continue walking and participate in clinical trials for treatments at the National Institutes of Health in Bethesda, Md. The first phase of trials, which includes pre-clinical toxicology studies, could begin next summer if $1 million is raised to fund it, according to Daniel Darvish. The entire trial could cost up to $20 million. ARM plans to unveil an online Dollar Campaign so that supporters can donate money and keep track of progress. Redlawsk credits the organization with financing research that has sped up the timeline for clinical trials for several therapies.
“I’m perfectly aware that I might never see that cure,” said Redlawsk.
For her part, Redlawsk said she will continue using her design background to spread the word about HIBM. And although her future health is uncertain, that does not keep her from making plans for it and dreaming of the possibilities. She and her boyfriend hope to get engaged this year and talk about adopting children one day.
“I don’t consider that my life needs to stop because of HIBM,” she said. “If anything, I need to do more. I try to be as positive as possible because that is the only situation I can control.
“I also don’t want to give the impression that it is not extremely difficult. With that, some amazing things have happened as a result and amazing doors have opened. And I am truly thankful for those moments.”