How Scleroderma has changed my life? Charlotte Amelia Metcalf

The beautiful fall foliage blurred outside the car window as we drove from South Carolina to Pittsburgh. It was October 2020, and the world was reeling from the Covid-19 pandemic. My parents were driving me at age 12 to see a specialist many states away, because our local pediatric rheumatologist had only seen one other case of linear scleroderma of the head/neck in her career. The fact that millions of people in the world had suffered and died from a common disease, Covid-19, was sharply juxtaposed against the fact that I felt like one in a million people with my diagnosis. The world was on fire, and entire governments, private laboratories, and universities were heaving resources toward developing a vaccine, understanding the nature of Covid-19, and putting the fire out. But, who was putting out the fire of scleroderma?

We traveled to see Dr. Katherine Torok, a leader in this diagnosis. A physician-researcher with a heart for people just like me, walking a lonesome road. She is a firefighter, running toward a fire that very few people know is even burning. It only took one physician to make me feel seen and understood, even if she didn’t have all the answers. The beautiful thing about Dr. Torok is that she actually is working to find answers. I’ve learned a tremendous amount about the healthcare system, clinical research, bench research, and the politics of funding rare disease research because of scleroderma. Scleroderma and other rare diseases need more than a local 5K run, although that has its place. Making progress in scleroderma research involves many moving parts, and my perspective on rare disease changed because of my scleroderma diagnosis.

I began treatment with steroids and weekly methotrexate injections. I dreaded the methotrexate injections, knowing that the next day I would feel awful. We chose Saturday nights to do the shots, because I had cross country meets Saturday mornings. I would go from feeling fantastic racing in a fall Saturday morning cross country meet, to feeling awful the next day. I learned what endurance truly meant, and I learned to trust the doctors around me who were confident this was the right path. I had two surgeries to remove fat (with healthy stem cells) from my flanks and placed it along my jaw, where the scleroderma is. I learned that beauty is not what is splashed all over curated images, but it is within each of us, no matter what is in the mirror. My grandmother who lived to be 100 preached pretty is as pretty does, and she was right. My self-image and concept of beauty changed because of scleroderma.

My curiosity about medicine and science have led me to the edge of the medical understanding of my diagnosis, and being at this raw edge gives me the responsibility to push the line. My career goal is to be a physician at the edge, which may not be a unique career goal in the scleroderma community, but it is genuine for me. I plan to understand the science needed to move the line, know the landscape of funding and the process of research, and look into the eyes of those it ultimately benefits. Will it be a long career process? Yes, which is why it would be my humble honor to receive this scholarship. When you look at me, you can see the scar from the disease on my face. The unseen responsibility is to strap on my firefighter gear and dutifully move toward answers and treatment for the millions of us who have heard the smoldering statement, I’ve never seen this before.

I plan to attend Clemson University Honors College this fall and complete pre-medical requirements as a Spanish Language and International Health major. I’ve always felt compassion toward individuals who are going through health crises that cannot speak the same language as their physicians. It’s difficult enough when you speak the same language! My dream is to improve my fluency in Spanish so that I can compassionately communicate directly with my patients. I got a taste of communicating and relating to Spanish-speaking patients during my internship at our hospital’s patient transport service. I could see their faces light up when I unexpectedly spoke their language when I didn’t look like them. Which medical speciality I end up pursuing is to be determined, but I feel certain that my 5’0″ frame will pair well with a pediatric setting. I feel it is my calling and I know it will be worth it. This scholarship will help me reach the goal of being a pediatric physician who understands the deep needs of families dealing with rare diagnoses like scleroderma and offers hope.

I am a young person, but I’ve lived enough to know that there are many things in life that don’t come with a why. But, everything we do comes with a how. How we use our time, how we serve those around us with empathy, how we listen, how we extend a laugh or hug. I plan to use this scholarship to get closer to the why of medical problems, while living out my life how I’ve been called. My how is to listen more than I speak, pour my intellectual energy into being the best student I can be, not be afraid of hard questions, and lift up those around me.

Scleroderma has changed my life because it gives purpose to how I live my life. I understand more fully that some of us have scars that can be seen on the outside, but all of us have scars on the inside for one reason or another. Some people may see my scar and not ask about it, but when others mention it (usually the children at the YMCA after-school program at which I am a counselor), the confidence with which I respond about it has been hard won. When I didn’t feel confident, my parents, doctors and friends saw the beauty in me that I sometimes could not. I carry the truth with me that I am fearfully and wonderfully made, and I want others to know that about themselves. No one should be left behind, no matter how rare their situation.