Congratulations to Adelyn! – 2024 Scholarship Recipient

Join us in congratulating Adelyn!

Adelyn has been kind enough to allow us to share her essay on our website for others to see. You can read her essay below:

How has Scleroderma has changed my life?
“How did you bruise your chin?”, “Who punched you in the face?”, “What happened there?” are a few of the many questions I receive day after day. I do not blame people for being curious. It is a natural human response to question sights in which we are not familiar with. I hate to stifle their spirit of inquiry with the awkward response of “Oh, it is not a bruise, it is a medical condition called Morphea”. They reply with an embarrassed “I am sorry” and nod as if they are familiar with the rare, strange autoimmune disease as I add another tick to the mental list of people that have commented on the dark, permanent spot on my face.
I wish it was a bruise. At least then I could find confidence in knowing that my body would heal and return to its original color. However, when cells have been injured and inflamed, specifically the cells that line blood vessels, pigmentation is permanently altered. My already fair skinned face slightly shows the blue toned blood vessels easier than most. Then, the localized scleroderma attacked my skin, thinning and breaking it down layer by layer until the blood vessels became noticeably prominent and light complexioned face gained a “bruise-like” spot. Concealer and foundation have become a staple in my morning routine. The makeup products help, but do not fully hide the most evident of my medical conditions.
When I was entering 2nd grade, I was diagnosed with Juvenile Dermatomyositis (JDM), an autoimmune disease that causes skin rashes and muscle weakness. I was a very active child that slowly became weaker and easily exhausted. There were several abnormal incidents that hinted towards a deeper, more concerning problem, rather than simply a child who was actively drained. Thankfully, my growing fatigue alarmed my parents enough to take me to my primary care specialist, Dr. Stuppy. By grace of God, Dr. Stuppy connected my symptoms with a rare disease she saw once in medical school. Most kids go years without properly being diagnosed for JDM and become wheelchair bound because of their muscle weakness. Luckily,Dr. Stuppy caught it early and immediately referred me to a rheumatologist, Dr. Lindsley. Juvenile Dermatomyositis has no known cure but can be treated with steroids and immunosuppressants, such as Plaquenil and Methotrexate. These “miracle” drugs saved my life but came with nasty consequences. I gained weight and grew hair as if I was going through amplified puberty. The medical troubles did not stop there. During my Juvenile Dermatomyositis recovery, I began enduring frequent bone fractures. Meddlesome “breaks” targeted my fingers, wrists, and ankles. In 2015, I was diagnosed with Juvenile Osteoporosis, a disease in which my bone mineral values were lower than normal standards. In total, I have broken over 20 bones. In an attempt to strengthen my bone density, I began Zometa infusions that left me nauseous and exhausted.
Those diseases have caused endless worry for both myself and my parents. The treatments were expensive, the doctor appointments were frustrating, and my health was a constant uncertainty, all because my body was not working the way it was designed to. Even as a child, this led me to ask “Why was God doing this to me?”. My parents, my biggest blessings, drilled into me the important truth that God was not purposely inflicting pain or causing my immune system to fail. They stressed that at times, life simply does not go the way we hope or plan and added that the Lord would be with me through trials and tribulations. My faith is just one thing that was strengthened throughout the medical hardships. I grew to be resilient; determined to overcome the diseases and hopeful for my success. Gratitude became a mindset as my parents and I celebrated every clear X-ray and strengthened bone density scan. My conditions truly made me a better person.
Sometime between then and the beginning of highschool, I lost sight of the life lessons I had learned throughout my hardships. Middle school was a gateway to comparisons, competitions, and confidence issues. I began to find my identity in my friends, grades, and swimming success. I pushed myself to be the very best and when I fell short, I felt as though I failed at everything. This was not determination anymore, it was striving for perfection. It was an unhealthy cycle that led to mental health struggles during my sophomore year of highschool. Most of all, I had recently been diagnosed with a pesky autoimmune disease called Scleroderma/Morphea. An unremovable, shadowed spot causing atrophy on my face was like a death sentence for a hormonal teenager. Not only did I live with the embarrassment of my medical condition being showcased on my chin, I lived in fear that it would spread. Maintaining sunscreen application and taking medicine were crucial in controlling the localized Scleroderma. One of the medications I took was a repeat drug from when I was combating Juvenile Dermatomyositis. Methotrexate injections worked wonders but consistently left me feeling very sick the day after. That medication brought me back to the harrowing struggles that I faced when I was young. It was almost as if the Morphea medication caused me to have an epiphany. I realized I was not living the way in which I wanted. I was letting a little spot on my face hold great power over how I thought about myself. I was letting my race times define how skilled I was as an athlete. I was letting one low test grade represent my intelligence as a whole. I was letting my mistakes ruin my chance for success. I was letting minute and unimportant situations impact me in such an immense and negative way. I was shocked by the culminating realization that I had fallen into a dark place and had done nothing to stop it. That was motivation enough to turn my life around. However, changing a mindset that has grown so gloomy and toxic is easier said than done.
Overtime, my perspective broadened and my frame of mind healed. I regained hope and resilience as well as learned how to give myself and others grace. I found confidence in things above the world, like my faith and effort, rather than my outward appearance. Psalm 139:14 reads “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” This verse alone helped to reinstate my worth in a way that is healthy and truthful. These positive inward changes served to strengthen my relationships with others as well. I became a more forgiving friend and a more loving daughter, all because I now knew how to forgive and love myself more effectively. I also became a better student and athlete. I had a newfound appreciation for the process because I learned to not dread the possibility of failure in the results. Because of my evident optimism and healthy mindset, I was named captain of my Club Swim Team (COOL) for my senior year. The coaches claimed to have seen my growth as a swimmer and a person and sought for me to share my experiences and lead my team well. All growth comes from situations involving discomfort, failure, or hardship. And as Ben Franklin once said “Without continual growth and progress, such words as improvement, achievement and success have no meaning.”
My medical troubles have in no way been pleasant or enjoyable. In fact, they have led to some of the most difficult periods of my life. However, even as a victim of my diseases, I will argue that they have not only been important, but vital in shaping the kind of person I am today. The unfortunate conditions, especially Scleroderma, have taught me how to overcome adversity. Additionally, it has helped me to find my passion. I have spent hours upon hours with doctors and nurses who evaluate my conditions and show patience as I try to understand the science behind how my body works. I have become fascinated by both understanding the body and curing any problems it might have. My experiences have motivated me to pursue medical school and specifically look into dermatology. Medical school has been made to seem daunting and grueling but Scleroderma, as well as my other diseases, have taught me grit and perseverance. I intend to get my degree in biology or biomedical engineering and further my education by going to medical school after college. This dream is all thanks to the caring nature and compassionate treatment from medical field employees.
Even though I still struggle with the reality that the “bruise-like” spot on my face will likely never disappear, I have learned valuable lessons and applied knowledge that will serve me well for the rest of my life. Scleroderma negatively impacted my life, however I feel that it has changed me for the better and served as a first-hand source for inspiration and motivation. I wouldn’t wish to endure the morphea battles again, but can now express gratitude over the fact that it has happened and the ways it has changed my life.