I Have a Rare Disease. Here’s Why I Chose to Do a Clinical Trial as a Black Woman

By Tasha White, as told to Taylyn Washington-Harmon

My name is Tasha White, and I was diagnosed with myasthenia gravis at the young age of six years old. Myasthenia gravis, or MG for short, is a chronic autoimmune disorder that causes weakness in the skeletal muscles.

For me, the first signs were having episodes where my body would just give out and I’d have to use objects around me like a fire hydrant to pull myself back up. My mom noticed I wasn’t as active as most kids my age, so she persisted in getting me properly diagnosed. 

How I was diagnosed with myasthenia gravis

For me, my first signs were complete body fatigue. I remember being outside playing and my body gave out. I was near a fire hydrate and stop sign that I used to pull myself up.

My mom start noticing I wasn’t as active as most kids my age, so she persisted in seeking medical attention for me.

Looking back, I was incredibly fortunate to get an early diagnosis and start treatment right away. So many people with MG go years or even decades before finally getting correctly diagnosed due to lack of awareness about this rare condition.

My positive antibody test results made the diagnosis clear for the doctors. I had a thymectomy at a young age which tremendously helped manage my MG over the years.

Growing up, my family’s support system was invaluable, especially from my aunt who also lived with MG. Seeing her experience helped prepare me for any potential challenges ahead.

With their guidance and the right treatments like mestinon and prednisone when needed, I was able to have a remarkably normal childhood. I participated in school activities, played with friends, and stayed on the honor roll. While MG was always part of my life, it didn’t define or limit me thanks to diligent management.

Coming out of remission

When I was 29 years old, something changed—I experienced my first major flare-up of symptoms after over two decades of remission. It was both terrifying and confusing since I had been symptom and medication-free for so long. I didn’t even realize MG could have triggers like heat, stress, or illness until that rude awakening in 2015. Suddenly I was in the hospital, being introduced to new treatments like IVIG and plasmapheresis to get my MG back under control.

The years that followed brought many cycles of flare-ups, new medications, switching doctors to find the right fit, and a relentless journey to regain my previous quality of life. It was an incredibly difficult period filled with excruciating migraines, vision issues, speech problems, severe weakness, and even scary encounters with medical professionals who lacked understanding about properly treating MG patients. 

My MG clinical trial experience

Through it all, the perspective and knowledge I gained from participating in a clinical trial years earlier proved invaluable. When I was over 18, my neuromuscular specialist recommended me for a study examining how the thymectomy impacted antibody levels and symptom control in MG patients. For over a year, I had regular bloodwork and medication adjustments as the researchers collected data.

Being part of that clinical trial gave me a deeper understanding of MG, how it’s studied, and the importance of representation. As a Black woman, I recognized how crucial it is for people of color to participate in research for conditions that disproportionately affect us. Our experiences and biological factors matter greatly in developing better diagnosis and treatment methods.

Moreover, the trial helped prepare me to be a more proactive advocate for myself during my acute crisis years later. I knew how to insist on proper care, ask critical questions about treatments, and push firmly but respectfully for my doctors to truly listen to me as the expert on my own condition. No one understands what a patient is going through better than the patient themselves.

Why I advocate for clinical trials

While I’m doing much better today thanks to finding the right treatment regimen under an excellent specialist, my experience made me appreciate the pivotal role clinical trials play in our ability to live better with MG. Every new drug and therapy arises from years of rigorous study and testing through clinical research. The more diverse array of participants, the better the data becomes to develop safe, effective treatments that work for the entire MG community regardless of race, age, or gender.

That’s why I continue encouraging others in the MG community, especially minorities, to educate themselves on clinical trials and strongly consider participating when possible. It’s an invaluable way to move the entire field of study forward, have your valued voice and experience drive progress, and open doors to new treatments that could vastly improve your own condition and countless others in the future.

Clinical trials require the bravery and compassion of patient volunteers to make any medical breakthroughs possible. I’m forever grateful to those who came before me in MG studies that led to the treatments that gave me a normal childhood. Carrying that torch by participating in research myself, no matter how small the role, allowed me to pay that invaluable gift forward. It’s an amazing way to transcend simply being a patient and take an active role in creating a better future for all those living with myasthenia gravis.

Tasha’s story is a courtesy of Savvy Cooperative.