Alex Biagi: Mouth Painter
I’m a disabled mouth painter from Morrison Colorado. I’ve only been painting this way for four years (since 2015) I have a rare autoimmune neuromuscular disease called CIDP. The odds of getting CIDP is one in 100,000. I've had this disease for 15 years (since 2004) It started when I was 24 and it happened out of the blue. Before this disease I was very active. I played basketball, soccer and other sports. I also played the piano every day from age 6 to 24, I taught myself the guitar 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 wasn’t 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. I pulled through and was in the hospital for 43 days during the process.
During this process they destroy your entire immune system as well as your bone marrow with heavy chemotherapy. You also have to stay in a clean room during this time. It was worth almost dying and suffering for because now almost 3 years later (2019) I'm out of my power chair and walking almost 2 miles without stopping with braces on both legs, because I have foot drop on both feet. I also have little nerve pain, although I do get flareups from time to time but it's nothing like it was before the transplant.
In the last couple of months since (March 2019) I've almost regained full motion of my right arm and my left arm is making big improvements as well. Unfortunately I haven't seen any improvements yet in my left hand which is still completely paralyzed. I'm seeing a little improvement in my right hand. I'm able to bend my middle finger a little bit more than I was able to before. Thankfully I have enough strength in my right hand to use a computer mouse. I'm able to bend my right pointer finger to click the mouse so in addition to mouth meaning I'm able to work on multimedia, graphic design and music production. Which is huge, because before I became sick I was a musician as well as an artist I played the piano almost every day from age 6 until 24. So now I'm able to music electronically.
Throughout my life I've had 21 surgeries, 10 from CIDP and the rest were from playing sports and other injuries but I keep pushing through and find ways to adapt so I can continue to do the things I love.