It’s Rare Disease Week! For my new followers, I’m Kam! I’m a disabled artist, writer, advocate, industrial designer and Korean American adoptee. I was born in South Korea, transported and grew up in Michigan and moved to sunny Los Angeles over 15 years ago.

While I advocate for disability, rare disease is another entire (very important) section that I could write a book on. It’s unique. We’re rare and often unseen and unheard — and it’s heartbreaking. A world of greed and profit centered capitalism says rare does not count as important as mainstream diseases and offers little profit in a multi-billion dollar sect of high profits in drugs + therapy. Except, combined, there's up to 7,000 rare diseases worldwide — most of them genetic, difficult to diagnose. chronic, very serious and progressive. This affects up to 400 million worldwide. 

Well-known rare diseases are MS, Parkinson’s and ALS but most never see the light of mass awareness. Many rare diseases are considered highly treatable compared to diseases like cancer because they’re typically genetic. 1 in 20 people will be affected by a rare disease in their lifetime, and only 5% of rare diseases have treatment. Half of rare disease patients are children and often fatal. 

Here is my rare story:

I have an ultra rare and progressive muscle-wasting condition called GNE Myopathy (GNEM) which will eventually lead me to complete immobility, if no treatment is found. It was during my college years that I endured some five to six different diagnoses as I traveled from hospital to hospital, and even state to state. In hindsight, my symptoms began when I was 17, but I didn't notice until I was 20 but didn't really begin searching for answers until 20. I’ve lived with this condition for over 22 years. I’m quadriplegic and need help with just about everything now, including eating. Nevertheless, I’m still able to do and create so much with a well-stocked mind and what movement I have left in my arms and hands. 

Upon final diagnosis in 2004, I was told to quit college and accept a less than mediocre life, including never seeing treatment development because I was that rare. 

I had other plans and moved to California to look for design opportunities when I happened to meet two patients, just like me — something my specialists said would never happen. So my advocacy almost began immediately upon stepping foot on California soil, and it’s been an absolute wild ride in every single way: from my advocacy, my career and the life mentality of living my life to the limit. 

On the side of a full time design job, I became a creative director and single-handedly rebranded an entire nonprofit focused on treatment and awareness for my rare disease, including doing all the PR, print and web media design myself. I rallied a base of patients to finally tell their story, and became a community organizer with projects like Bike for Kam. I had never done any of this. I was new to it all. But I knew something needed to be done because we were rare, so if not me, then who? But in my advocacy and fundraising, I soon realized the general public is inundated with names of diseases and aren't going to respond to medical textbook jargon, so I knew I needed to develop a connection for anyone to truly care. And, that’s when storytelling began. 

I started the very first blog (I believe) for my rare disease in 2009. I used this space to share my intimate thoughts and moments of living with a progressive condition; from the adventures, to the grief and loss, to documenting the progression and how it felt, to showing I was a “normal” person with many interests and dreams (having to advocate I’m normal is still so strange). 

A year after I began blogging, I thought art could be another way to express this experience as everyone connects differently, so I became a self-taught illustrator (2010) and found drawing my experience was completely different than using words. Since then, I've used both writing and art in juxtaposition to share my story and paint an idea of what the experience of disease, illness and disability has been like, and through this I have found true connection is about fully sharing yourself.

In 14 years of advocacy, using tools like drawing, writing and photographically documenting my wheelchair travels and many road trip explorations has become a way to connect, build community and spin meaning for those who are disabled, rare, alone… and even those who are not. 

My art is mainly inspired by my progressive rare disease and other aspects of my life, like being a Korean Adoptee

I think the purpose of storytelling is twofold. One, so others out there who are different or struggling know they exist and not alone. I've lived with this disease for over 20 years and the first half I dealt with it completely alone including searching for a diagnosis. So I know what isolation feels like. And two, educating the public on a perspective most probably have never experienced or even thought of, because they don’t have to.

I've found art and writing is a very personal way for me to connect. Writing is more literal, but art is subjective storytelling. So a simple image can say so much yet it's up to the viewer to interpret and apply how they feel in the space I've created…which is pretty cool. Since my condition is progressive, my art and writing can replay a theme of constant loss and ask, how does one deal with loss that is on a continuous cycle? Even if one does not have an illness or disability, speaking to basic concrete emotions, like grief and joy is something we all experience. It's accessible. 

Stories humanize us. They can educate and change minds. They make ideas and people accessible, and can lead us to compassion, connection, awareness and understanding. Storytelling is important because it allows us to be explorers — to travel and experience vantages we normally wouldn't know because it's impossible to know all the corners of possibilities of what a life could look like. So, stories provide us that privileged window. A unique perspective.

Stories can also bring us to moral grounds. The way we conduct our business, design political policy, the way we vote or develop medical treatments — to see there are real stories and real lives behind every single decision we make is important. Our stories are also for the medical industry and a society that often views us only through the lens of medical definitions and scientific analysis. This industry many times leaves out the humanity of our stories and our uniqueness that lives far beyond our isolated medical illness and unique bodies. 

Currently, there is no treatment for my condition and while I think I’ve done well accepting my condition, knowing my worth and living my life to the fullest as a disabled person, I can’t deny that I would give anything to at least stop this progression. I have such little mobility left, as it is, but that little that’s left is monumental. I’m now even having trouble using my phone, my lifeline and portal to my advocacy in whatever position I’m sitting or laying in, but alas I now struggle with this. I’ve had so many stages of loss and I’m so very tired of losing everything I ever loved from running, playing sports, driving, cooking…and soon, art. 

I think experiencing illness is very profound and very human, and storytelling brings the humanizing element to the front. A story can be a moment or an entire world, and they invite us to imagine life beyond our personal scope. They make us question ourselves and the world around us. We don't learn empathy through ideas, we learn empathy through experience and stories; and in these various perspectives we can try and find the complicated truth of what is and isn't through connection. 

I feel when we connect, our fears, ignorance and walls dissipate. So to other rare disease patients: don't be afraid to share your story, and be candid, open loud and proud, because our stories are no good kept in the dark — for ourselves and others.

Please, see us, hear us, and stop exploiting us. Represent us, not because of huge profit margins, but because you care about the Davids up against the Goliaths, and because it’s the right thing to do. The general public can help by sharing our stories. Care about rare.

I have some exciting news to announce on Rare Disease Day (Monday, Feb 28) so please, visit my Instagram in a few days to see what it is! It’s a collaboration I’ve been working on with a company for months and it involves my art. #kamswheelstravel #kamdraws