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Alex's Story

“I’m a disabled mouth painter from Morrison Colorado. I’ve only been painting this way for four years. I have a rare autoimmune disease called CIDP. The odds of getting CIDP is one in 100,000. I've had this disease for 15 years. It started when I was 24 and it happened out of the blue. Before this disease I was very active. I played basketball and soccer. I also played the piano every day from age 6 to 24 and I drew every day as well. I went to college for 3D animation but came up two classes short before the disease started. 

CIDP is an autoimmune neuromuscular disease that affects the peripheral nerves in your body. There is a protective barrier around your nerves called the myelin sheath. Your immune system gets confused and thinks the myelin sheath is a foreign substance, so your immune system attacks the myelin sheath stripping away the protective barrier around your nerves.  That leads to muscle wasting, lack of motor function and sensation. You can also experience burning, numbness and tingling. I had all of these throughout my body. Sometimes in rare cases like mine it also leads to paralysis. My left hand is completely paralyzed and I have a little movement in my right hand. I have enough strength to use a computer mouse so in addition to mouth painting I also work on digital music and graphic design. It can also causes foot drop which I have on both feet so I use braces to walk. It can also affect your breathing and respiratory system in severe/rare cases like mine. I've had pneumonia four times and respiratory failures twice. Nearly dying on all accounts.

In 2016, I did a HSCT (Hematopoietic stem cell transplantation). I'm the first to do it in Colorado for my disease. The procedure was not easy. I almost died because I had a rare reaction to a rabbit anti-body introduced during the process, (most people won't have this kind of reaction). I was code blue. I was rushed to the ICU and intubated for five days and in the ICU for 20 days. I pulled through and was in the hospital for 43 days during the process.  During this process they destroy your entire immune system with heavy chemotherapy and do a bone marrow transplant as well. You also have to stay in a clean room during this time. It was worth almost dying and suffering because now almost 4 years later (2019) I'm out of my wheelchair and walking almost 2 miles without stopping. I also have little pain and they regained almost full motion of my right arm. Unfortunately, my left arm is still bad. I'm unable to get it above my head and my left hand is completely paralyzed. I have enough strength in my right hand to use a computer mouse so we still do music production and graphic design. I've had 21 surgeries in my life, but I keep pushing through and find ways to adapt to continue doing the things I love.” 

There are many reasons why Alex is a Creative Soul. He is passionate, driven, and has fought extremely hard to be where he is at today.

Alex is truly a Creative Soul.


Alex’s Media: Website | Instagram | YouTube | Reddit