How Scleroderma Changed My Life

Grace Gallagher

For most young people my age, the one year that they remember most is the year Covid hit, 2020. For me, it was 2019 that will always be burned into my mind. This is when I started noticing hardened, bruise-like spots on my body, specifically on my lower back and left leg. When I showed my mom, she thought they were bruises from gym class or playing outside. Little did we know how much these “bruises” would change my life.

After some time passing, my mom took me to a pediatric dermatologist to have the spots checked. Not only were they not going away, they were growing. Because they rarely see patients with spots like this, the dermatologist immediately called in three other dermatologists who all looked at the spots on my leg and back. I felt like a zoo animal as they all poked my skin, took pictures, and said scary words like biopsy and Morphea but I had no idea what they meant. All I knew was that I was 13 years old, my skin was looking weird, and I was extremely self- conscious about my bruises. The doctor did the biopsy on my back spot and told us she would let us know the results soon but for now to try some creams on them. The creams had no effect and we quickly learned that it was indeed Morphea, a rare form of Scleroderma, Linear Scleroderma to be exact. Nine months later, Covid hit.

Imagine being a young teenage girl at a time when I should have been having fun with friends, starting high school, and looking forward to school dances and marching band trips. Instead, I was dealing with steroids that made me look like a balloon, weekly, painful shots, daily pills, purple spots all over my body, and on-line learning. It was the biggest double whammy I never imagined. I was ordered to stay away from all of my friends and extended family as I learned to deal with this new diagnosis. I was confined to two houses: my mom’s and my dad’s. The extent of my diagnosis year was going from one bedroom to the other trying to figure out this new life. It seemed like things could not get any worse. How would I get through an autoimmune diagnosis during the scariest pandemic in my lifetime?

It turns out that not only did I make it through my entire freshman year of high school at home learning how to deal with new medicines and sickness, I thrived. I struggled with nausea daily from the methotrexate but learned that taking it with folic acid and anti-nausea medicine helped tremendously. I learned I could persevere through the pain and the sadness and the anxiety by learning calming techniques and speaking weekly with a therapist. I am so lucky to have the best Pediatric Rheumatologist in the country who I see four times a year for check ups and blood work. I have marched at football games and parades on days my joints ached. I became the Assistant Stage Manager in my theater program as well as the President of our school’s drama club. My young teenage self realizes now that life can, and will, hand you lemons, but you have to make the best of them. I excelled at online learning during the toughest year of my life and achieved straight A’s. I am now getting ready to graduate from high school with a 3.9 GPA and as a member of the National Honor Society. I am so proud of myself.

It is not all sunshine and roses though. It is often hard for me to stay optimistic. As a matter of fact, I still often shut down when somebody asks me about my disease. I don’t like acknowledging it or talking about it. It was hard for me even to write this essay. Hopefully though, another young teenager might read it and realize they are not alone. Having a rare disease that nobody has even heard about is not easy. I am still learning how to deal with the hard stuff.

A few months ago, we received some good news from my doctor: the spots were looking great and I could reduce my medicine dosage with the hopes I could be off all medicine by the time I go to college. I was thrilled only to go to the next appointment to see the spots were getting worse again. My dosage went back up. While that does frustrate me and make me sad, I realize it may be like this for the rest of my life. Isn’t that what life is though? Some good, some bad…you do learn to roll with the punches. Scleroderma is a part of my life now but it is not my whole life.

Looking to the future, scleroderma has changed my life drastically but not in all terrible ways. I am still on folic acid and methotrexate and I still talk to my therapist about my worries and concerns. I will always have to see a Rheumatologist and the spots and stretch marks on my body will never go away. But, I have learned that I am strong. I have learned that I can do hard things. My future is looking up. I plan on going into the Honors Business Program at Indiana University of PA where I would like to major in Hotel, Hospitality, and Event Management with a minor in Business. I am hoping to graduate in five years with my master’s degree. I would love to travel the world and really experience life…with Scleroderma.

I came across this quote by C.S. Lewis that really resonates with me: “Hardships often prepare people for an extraordinary destiny.” Has Scleroderma changed my life? It has. I’m learning to be okay with that. I am thankful for the life lessons it has taught me and for the person it has helped shape me into today. I am overcoming this hardship and I plan to have an extraordinary destiny.