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…
Have you ever met someone and felt like the stars were aligned and everything was right in the universe? That’s what it was like to meet my friend Cat Davis. In 2016, I was in Washington, D.C., for Capitol Hill Day, an advocacy event sponsored by the National Scleroderma Foundation. I…
It had been years since I’d stepped foot in a nail salon. Yet the moment the doors opened, I was immediately reminded how much I missed those days of being pampered. The beautiful crystals on chandeliers danced above me. The water features and serene spa music soothed my soul. With…
Twenty years. That’s how long I’ve been living with scleroderma. That’s half of my adult life! Over the years, I’ve learned how to cope, be it physically (not being able to do things without help) or emotionally (living with a disease that changes your entire life). I’ve tried my…
I couldn’t find our family’s teacup-size dog. She had only been out of our sight for a few minutes. I scanned the dark, fenced-in yard looking for this adorable, fluffy furball. My eyes finally fell upon her white body floating in the pool. She wasn’t moving. Time to save a…
Having a rare disease often means dealing with uncommon symptoms. Sometimes I get lucky and one of my specialists can explain and treat them. However, the mysteries of my scleroderma-stricken body usually leave my medical team scratching their heads. Every time I meet a new doctor, I leave the appointment…
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