Diving into the unknown

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.

I made the decision to undergo this treatment as I was out of all other options, and my prognosis was very poor. I also knew that by participating, I could help save the lives of future patients who, like me, had exhausted all options.

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.

chanel-bed

To my surprise the entire experience felt no different from any other hospitalization, or procedure; honestly, it was probably the best care I have ever received in my many years as a patient!

The first step was to submit my medical records so the research team could assess whether I would be a proper candidate.

After being deemed an appropriate candidate and meeting all the inclusion criteria, there was an abundance of paperwork to fill out. Most of it detailed the trial procedure, however a large chunk detailed the risk involved in participating. I went over all of it with the research team who thoroughly answered every question and concern. They even had a financial team who was able to successfully ensure the entire procedure was covered by my medical insurance.

My trial took place in one of the nation’s top hospitals, with a world renowned team. I underwent an Autologous Hematopoeitic Stem Cell Transplant, in hopes of replacing my malfunctioning immune system. While this transplant is already FDA approved for cancer, and specific blood disorders, the transplant is required to go through additional clinical trials before it can be approved as treatment for any other illness. I was simply undergoing an already FDA approved treatment, for an illness it was not yet FDA approved for.

This trial in particular was a huge commitment due to the long duration, and the serious adverse potential complications, such as death.

During the procedure I was inpatient on a beautiful, newly remodeled oncology floor. I was closely monitored by nurses every 15 - 60 minutes, and saw the primary research physician, or a member of his team, daily. 

Honestly, I have never had such secure feeling during a hospitalization; I never once felt like what I was undergoing was considered experimental. A medical professional was available to me at all times, and any adverse events that arose were quickly managed.

At the end of the process, two months after I began, I was released from the hospital and given thorough instructions on life at home post transplant. I had pager numbers for every physician, and received a weekly call from the team. I am set to return back every year, for five years, to monitor my progress.

I now see clinical trials in a much different light than before I participated. My quality of life has improved immensely, which is something that could have never been achieved without this clinical trial. Because I took the dive into the unknown I no longer tote an oxygen tank, or feeding tube. My future is looking much brighter - and longer, than before. Straying out of “standard care” realm of medicine honestly was the best thing I have ever done for my health.

Participation in this trial saved my life, and will hopefully save the lives of the patients who will be around long after I am. 

Chanel White
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. Chanel blogs at The Tube Fed Wife.