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Scleroderma comes with a plethora of uncommon and unbearable symptoms that may arise before or after diagnosis. For the first five years that I was living with scleroderma, I didn’t respond well to oral medications, causing my disease to worsen. My skin felt like that of a snake,…

I need a root canal! I have escaped the drama of this procedure for over 40 years, but now my fate is sealed. Before my scleroderma diagnosis, people would actually compliment me on my smile and my straight, perfect teeth. I would only visit the dental office for…

As a child, I constantly felt like I received the short end of the stick. In my immature mind, my older sister was praised up and down and showered with gifts, and my baby brother was cherished as the first male child who could do no wrong. Being the…

Last year, I celebrated the 21st anniversary of my initial diagnosis of systemic scleroderma. Well, it wasn’t really a celebration, and I didn’t have a party with balloons and confetti. It was more of a moment of mourning for the life I had lived before my scleroderma diagnosis, followed by…

Living with scleroderma fatigue is unquestionably a roller coaster ride. One day I’ll be cleaning the house and taking care of my responsibilities, and the next, I’ll be under a blanket, recovering from taking care of those same responsibilities. The energy I had the previous day will be…

Ever since I was a child, my parents fostered in me a solid work ethic and a refusal to quit. Whether I was playing a musical instrument or competing in a spelling bee, my parents always taught me to never give up. They instilled in me strength to fight adversity.

Note: The headline of this story was updated April 19, 2022, to clarify that scleroderma isn’t becoming less rare, but rather awareness of the disease is increasing. One evening in January 2014, I answered a call from my doctor’s office. After going over my lab results, a nurse nonchalantly…

Over 20 years ago, I was introduced to scleroderma at the tender age of 19. Our introduction was brief and pretty one-sided. The doctors told me I was sick. They shared that scleroderma was incurable and could be fatal. In that moment, I thought, “Nah, that won’t be me!” At…

Chronic pain is unfortunately a hallmark symptom of scleroderma. Before my autoimmune journey started, I had chronic pain in my shoulder from injuries sustained in a car accident years earlier. I thought I had a “shoulder up” on living with pain. Ba dum tss. However, I had been unaware of…

Do you remember playing “house” when you were little? I have fond memories of each of my little friends choosing a family member to imitate, and together we would act out the different family roles. Some chose the parental roles so they could control the narrative. I probably shouldn’t announce…