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They’re the elusive red diamonds in a sea of white. Rare upon rare, males with scleroderma make up 20% of scleroderma individuals. Their disease can also manifest uniquely among the community: Males frequently have more muscular and pulmonary involvement — significant pulmonary fibrosis and impaired lung function…

“Look, Mom!” My teenage daughter bounds excitedly into the room to show me her phone. The screen displays a message adorned with fancy scrollwork designs. She reads the words “June is Scleroderma Awareness Month!” Her smile radiates happiness. I know I should be elated that awareness is being spread…

The clock ticked loudly as the phones rang in unison with a ticking timepiece that was getting on my nerves. I wondered how long my appointment would take. Sitting in the doctor’s office had become second nature to me. Yet, I was ready to be done with…

If I were a vegetable, I’d belong in a 5-pound sack of couch potatoes. When I began my career in China in the 1980s, there were no movies, magazines, TV, or shopping. Working out was the only form of entertainment. I once went to the gym and met my future…

My fellow chronic illness warriors: You’ve never met me, but we’ve sat alone in the darkness apart yet together. Those of us who suffer from conditions like scleroderma have a higher risk of developing mental health issues. As someone who has multiple autoimmune diseases, I, too, have…

It was one of those “oops!” moments — the express elevator down to your gut when you realize you hit “Reply All” by mistake. My inbox dinged — a lame substitute for the “You Got Mail” jingle — and I read the message in which the sender referred to me…

“Don’t worry. This will feel like a pinch.” Sitting in the sterile room with a tourniquet wrapped tightly around my arm, I stared intently at the legion of vials awaiting filling. The pinch did not feel like a pinch; it was more like a bee sting. As the lab…

Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households at midday. Every person under the age of 8, including me, felt hackles rise up on the backs of our necks. A tinkling of chimes, a muffled cry. My eyes widened. “Ice Cream Boy!” I…

(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.) Something has changed within me Some parts are getting tight I’m through with tiny buttons Give me sweatpants day or night. Too late for second-guessing Too late to go back to sleep It’s time…

Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, and it’s messy. When my body is weak and consumed by aches, I spend a lot of time under blankets. During a flare-up, my…