Joseph's Story Living with Scleroderma
My name is Dr. Joseph Washington, and I'm a pharmacist by training and a patient living with diffuse cutaneous systemic sclerosis. I just wanted to take a moment to describe my experience living with this rare and incurable condition and a timeline to diagnosis. I've been living with this condition for over ten years, and it took me ten years to reach a diagnosis. When I was in middle school, I realized that my hands were always colder than my peers, even in the Florida sun, so I let my mom know.
I tried to rationalize it the best way a middle schooler could with my imagination. I was very fond of the Iceman character on X Man at the time, so I likened myself to a mutant. But my mother, she grew concerned — not only because she was my mother, but because she's a nurse. In her practice, she had seen Raynaud's phenomena and conditions with poor circulation before. So, she wanted me to go and see the pediatrician. We made a trip there, and like any good pediatrician, they did a physical examination and diagnosed me with Raynaud’s syndrome, but there was no blood work to identify if the condition was or would be secondary to something far worse, which is the condition that I have — scleroderma, the diffuse form.
We left the office with a name for what I had been experiencing but no clue that there was something lying just under the surface waiting to strike. That was around 2009. Zoom to ten years later, and I have a promising career ahead. I was a second-year pharmacy student, which is notoriously known as one of the most difficult years of pharmacy school, and it was stressful. I believe that it was the stress that exacerbated my condition to a point that I could no longer modify aspects of my life and navigate around it without acknowledging it. This time, I had to get a clear answer.
The situation that took place to warrant further investigation was that my fingers on my dominant hand grew purple; and unlike any other time where my hands were purple, I wasn't able to resolve the issue — not if I sat on my hands, or ran my hands under warm water, or used a hot pack. Nothing worked. So, I had to pay a visit to my primary care physician who sent me to a rheumatologist.
At that visit, I was told I needed blood work to be completed before we could make an official diagnosis which resulted in them taking 13 vials of blood from me. I was very fatigued, to say the least, from the blood draw, but I knew that I'd likely get some answers.
When I returned to the rheumatologist to get the readout of my blood work, it was a very solemn event. I still vividly remember the rheumatologist knocking softly on the door. As she came in, she asked how I was doing. Then she started to describe the condition, scleroderma. I was in shock, and I didn't know how to take the results that I had received, especially with so much ahead of me.
I was the first person to be pursuing a doctorate degree in my immediate and extended family, and my hope was to make my mom proud. Now, I was unsure if all of that was at stake after receiving this diagnosis. So in shock, I took that diagnosis, and I sat on it for a few days before disclosing it to my mother. After I shared the news with my mother, I decided to just focus on my work in pharmacy school because I still had the internal expectation that I was going to complete what I set out to accomplish.
Despite receiving a referral at my first rheumatology appointment to see a pulmonologist because of the potential of lung involvement based on the diffuse form of scleroderma that I have — I put it off. I put it off for nearly a year and a half until I had a major event that resulted in hospitalization. From there, I could no longer forego acknowledging the condition that I had. Even as an aspiring health professional with such a close proximity to the drugs that are used to treat conditions like mine, I put it off. From this experience, I've learned how to navigate the health care system. I'm fortunate to have a background in health care to understand some of the terminology, understand some of the gaps, and understand how to best engage with different points of the health care system.
It's because of that dual perspective, I had to take a step back and realize, wow, I'm truly grateful for where I am even with the condition that I have. And how can I be a force for good for the patient community that might not be as privileged to have this context or to be as close to health care as I am? So that's why I've turned to advocacy. It's a fulfilling experience where I can share the knowledge that I've gained, not only through lived experience as a patient, but also as a pharmacist. And for this reason, I am grateful for Dr. Bree's work, and I am excited to be able to contribute my individual story to the community at Made A Masterpiece.