Editor’s Note: This blog was originally written by Chanel White for Clara Health‘s Blog. Clara Health connects patients to breakthrough clinical trials.
Chanel White is a patient advocate who underwent a life-saving stem cell transplant in 2017 as a participant in a clinical trial in order to treat her Mixed Connective Tissue Disease. She blogs at The Tube Fed Wife and you should definitely follow her on Facebook, Twitter, Instagram, and Youtube.
In late 2011 I was diagnosed with an aggressive autoimmune disease called systemic sclerosis. The disease causes the body to overproduce collagen, which hardens your skin, vascular system, and internal organs.
My case had a very poor prognosis – a mere 10 years; however, my body went into widespread organ failure within the first three. I found myself at the age of 23 being fed through a surgically placed feeding tube in my abdomen, breathing through a small cannula attached to an oxygen tank, suffering the beginning stages of heart failure, and receiving home nursing visits to run infusions I was too sick to travel for.
I was once a vibrant young woman with a promising teaching career, to suddenly being robbed of basic human functions such as eating, and breathing. I was dying, and out of options after close to five years of failed treatments; it seemed nothing on the market could slow down my rapid progression.
After exhausting all the current treatment options on the market for my illness, my physicians turned to an experimental, but promising Phase 3 clinical trial.