“How Scleroderma Has Changed My Life”

Scleroderma has changed my life in so many ways, the biggest of those; how I now see the world. This disease has changed me for the better and for the worse.

Maintaining the positives of my new life is the best way to coup with my circumstances.

Scleroderma made its appearance in my life subtly in seventh grade. Throughout middle school I experienced various physical issues: tight neck, stiff fingers, zero energy, painful ulcers on my fingertips, and Raynaud’s phenomenon. I mentioned these concerns to my mother and her reply was always the same, “We can bring it up at your physical.” Only I had no idea when that physical was. My mom is a worrier. Mention a single concern to her and it will be on her mind for the next week. I was always careful with my details of pain since I did not want her worrying all the time, however, this did not work. My mom had a list of disorders that it could be, Systemic Scleroderma was on the list, but, from research, the chance of me having this rare disease at an early age was slim to none.

As our concerns grew, my appointment was made for a regular checkup, but that checkup soon turned into an experience we never expected. From the moment the doctor saw my hands he knew there was more going on than just Raynaud’s Phenomenon. After getting a second opinion by another doctor in the building, a referral was sent to Seattle Children’s Hospital, and we were making our way down three days later.

Little did we know this was going to be a frequent trip for us.

Waiting for 30 minutes in the waiting room soon turned into waiting for 2 hours in the examination room. Doctors came in and out within the time we waited but from one simple knock on the door, my parents and I knew the news we were hoping for was not the news we would be receiving that afternoon. “Braxtyn, we are diagnosing you with Systemic Scleroderma, and Myositis.’’

Watching my loved ones be so affected by my diagnosis was the hardest of all. For most of my father’s childhood, he was in and out of hospitals due a disabled sister who needed medical attention frequently.

A life of trips in and out of the hospital was something he never wanted for his family. Once we found out that navigating Children’s Hospital will not be too difficult, I watched as he slowly sunk into a deep spot and lose sight of God.

Our faith is a huge thing in our family. Receiving this diagnosis was a test of our faith in God. I know that God gives the hardest battles to His toughest fighters, which is a comment I often made to my father. Keeping myself in good spirits while going through all this was the only way I saw our family getting used to the diagnosis. The heavy effect my diagnosis held on my family was something that broke me inside, I knew the only way my dad would be able to heal and climb out of the hole he was in, was for me to keep my spirits up. Although I stayed happy for myself, I did it for my family. Chaos had come into our lives on a random August afternoon, the one thing I needed was stability.

Finding peace in the Lord is what kept our family afloat in unknown times.

I was able to stay happy and learn to adapt to my diagnosis, while symptoms of the disease still took a toll on me and my body. The stiffening of muscles and inability to move made a lifelong dream of mine feel out of reach. For as long as I can remember I have wanted to be a cheerleader at my high school. Living in conditions where I would wake up unable to even move my neck in the morning, I watched as this dream slipped away from me. Coming from a small town where being involved meant everything, the fear of not having a “thing” for the next four years was an intense feeling in me. My friends had sports to keep them busy throughout the school year, and I found myself at home alone most of my first year. Becoming a cheerleader would take work, but I knew I wanted to go after this dream of mine. I worked for hours to perfect the material but also work to gain back mobility that was lost throughout the previous years. My demanding work had paid off when I got the news of making my high school varsity cheer team. From that moment on, I knew that Scleroderma did not define me. The thought of physically being able to be a cheerleader was something even my doctors were unsure of, I was proud to know that I am not my diagnosis

Living with Scleroderma, and all the “invisible side effects” can make life challenging. Going into my first year, I was scared that I would not be able to enjoy the “best days of my life.” High school is all about the experiences and friendships you make, so I was scared that my illness would prevent me from attending events and creating new friends. The idea of being seen as “fragile” or “sensitive” was the last thing I wanted my peers to think of me, even though most of them have no clue the challenges I face every day. Scleroderma holds invisible symptoms that makes explaining my pain difficult. Most people are shocked when I let them know I am unable to do something because of medication, or physical limitations. I have since learned to not take for granted the days of good health. Summer months are my easiest months. Due to the lack of freezing weather and plentiful amounts of sunlight, I feel happy and healthy most of my days. When the chilly winter months settle in, life gets more difficult. I often struggle with my mobility, and hand circulation, and seasonal depression usually sets in making it difficult to find the motivation to do anything.

Scleroderma has opened my eyes to the world around us. Everybody holds their own struggles, whether it be physical, mental, or social. We are not fully aware of the full story. Scleroderma has taught me to treat people with respect, no matter your circumstance. Words and actions hold such great power.

If I have learned anything from my trials with scleroderma, it is that; we all suffer, some more intense than others, but nobody’s suffering is invalid to those around us. Our lives may never be perfect but treating those around us with the respect that they deserve will never go unnoticed.

Scleroderma came into my life suddenly, creating a mess within my family’s normal life. While I have been fortunate enough to not have seen the deep dark side of this disease, I have seen the trials placed in front of me and taken them head on. Through Scleroderma, I have learned life lessons and learned to persevere through whatever is thrown at me.

My journey with Scleroderma may never see its end but I will continue to fight this disease for the rest of my life.

– Braxtyn