Nov 8, 2022

My Rare Story

My Story

My name is Kam Redlawsk (@kamredlawsk). Born in South Korea, raised in Michigan, and living in Los Angeles, California: I’m a disabled Industrial Designer, artist, advocate, traveler, writer and speaker. I’m also a Korean American adoptee. I have a very rare form of muscular dystrophy called GNE Myopathy. It’s a genetic and progressive condition that doesn’t typically begin until your 20s and 30s. This condition has been leading me to complete immobility since I was 17. Today, I’m a full time powered wheelchair user and losing the ability to draw. For over 15 years, I’ve been using art, writing, travels and tools that connect us as humans, as a form of advocacy. Through writing, video journal and design I attempt to give an honest portrayal of everyday struggles, triumphs and my journey. I’ve designed an array of products ranging from cell phones, toys, electronics, and even contributed to the world's cheapest prosthetic knee joint for under-served countries. My illustrations are inspired by moments from my life; primarily thoughts on living with a very rare and degenerative muscle-wasting disorder. Sometimes, an image can describe what words cannot. I use design and life experiences on creative projects that elevate and celebrate disability and inclusion in order to educate a society that has very little disability awareness and representation. Typically, you’ll find me on road trips, in nature, scavenging for art destinations or concocting exploration plans. I’m living my life and I want others to know they can too, while advocating and dispelling harmful and grossly simplified and misleading stigmas about disability. I’m a daydreamer, a chaser of inspiration, and I believe stories create bridges within humanity.

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Daydreamer, Chaser of Inspiration / I illustrate moments from my life; primarily thoughts on living with a rare, progressive and debilitating muscle wasting disorder as well as chronic issues like pain and nerve pain. I have a very rare genetic muscle wasting condition called GNE Myopathy (aka HIBM). My genetic condition is progressive, slowly taking every muscle until quadriplegia is reached. I've been an advocate for my condition since 2007. I began blogging and illustrating my disorder to bridge greater understanding but I soon realized you don't need a rare disease to understand my depicted emotions, and most can relate to loss. So many of us grieve in our corners in silence aching to be understood and I hope my drawings can put an explanation to the unexplainable and shed light on those who feel alone.

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