Artist Creates Eye-Opening Illustrations About Her Rare Disease

"Keep telling your story and eventually someone will listen."

LA-based artist Kam Redlawsk is channeling her health issues into a powerful expression of creativity.

The illustrator has a progressive muscular disease called GNE Myopathy or Hereditary Inclusion Body Myopathy that is caused by an uncommon gene defect. The rare disorder affects muscular functioning over a slow period of time, and typically leads to complete disability. Often referred to as an “orphan disease,” it affects fewer than 200,000 people in the United States and has fewer resources dedicated to it than more common diseases.

Redlawsk turned to illustrating in order to bring more attention to her disorder, but discovered that her work has even helped others who aren’t dealing with the condition.

“My art was originally meant to spread awareness for GNEM but I’ve realized the viewer may see his or her own life in them, which is really nice,” she said. “I’ve had many strangers from around the world confess their own struggles and share how one of my drawings helped them to either see it differently or feel heard.”

The images reveal the plights and anguish that comes from dealing with a challenging health condition ― especially one that affects your mobility.

Kam Redlawsk

The artist’s symptoms appeared around the age of 20, when she started having muscular issues with her foot that affected her walking. After five years of misdiagnoses, doctors finally discovered she was dealing with GNEM. Now, at the age of 38, she has lost muscular control in her legs and uses a wheelchair full-time. She’s also starting to have issues with her arms and upper body.

“When a disease or disability strikes you, no one hands you a manual telling you how to deal with it,” Redlawsk told HuffPost. “It is a journey of self-discovery and with my condition it’s like experiencing the death of a dear loved one over and over again.”

Kam Redlawsk

Ultimately, Redlawsk says that her artwork helped her process her diagnosis, allowing her to face her disease each day.

My message for others dealing with rare conditions is to not give up,” she explained. “Number one, you’re your own best advocate. Do your research and don’t be afraid to get multiple opinions. Don’t be afraid to move on from specialists who treat you like a hopeless medical chart.”

She also stresses that those who experience rare illnesses or genetic diseases are not alone, even though it may feel like it a lot of the time. Creating awareness around the experience, whether through talking to loved ones or posting on social media, can lead to connection.

“Being a patient advocate while traversing the channels of never-ending loss or pain is difficult, but if you’re able, keep telling your story and eventually someone will listen,” she said.

Take a look at Redlawsk’s other illustrations below:

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