It was a particularly beautiful morning. The hot Florida sun was still low in the sky, and a light breeze kept us comfortable while we watched our youngest daughter play soccer. It was almost perfect. As usual, I was rudely reminded that my broken body needs constant attention. My bladder…
Editor’s note: As the title indicates, this column discusses suicide. Helpful resources can be found at the end of the column if you need support. In June 2011, my father died by suicide. The day I learned about his death was my…
Every year, some of the finest performing artists donate their time and talents to Cool Comedy, Hot Cuisine (CCHC) in support of research programs for the Scleroderma Research Foundation (SRF). The event has featured appearances by Bill Burr, Dave Chappelle, Kelly Clarkson, Jimmy Fallon, Whoopi Goldberg, Regina Hall, Jimmy…
Between dry mouth, gum disease, cavities, and tightening of the mouth, scleroderma can make dental care extra challenging. David M. Leader, DMD, MPH, is an expert on dental health and scleroderma, and a longtime supporter of those with the condition. He is the director of the Emergency Clinic…
Scleroderma, lupus, rheumatoid arthritis, Sjögren’s syndrome — all of these are autoimmune diseases. And they’re invading my every cell. I’m displeased by how these diseases have made themselves at home…
I hate admitting that I often find myself trapped by jealousy. It makes me feel like I have a rotten core. Do all good people have these thoughts? Or am I an imposter failing to be the genuinely good person I aspire to be? An inspiring story filled me with…
The machine monitoring my vitals beeps annoyingly to alert the nurses that my blood pressure has dropped again. My limbs ache from the frigid air conditioning, and my body is sore from being held hostage in the hospital bed. Fear, loneliness, and pain begin to consume my thoughts once again,…
Joep Welling’s story is among those featured in More Than Scleroderma, an initiative by European pharmaceutical company Boehringer Ingelheim to showcase how various people have adapted to life with the disease. A video of Joep for the project shows him using a 3D printer to fabricate tools that help…
My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. They are both saying the word “marshmallow” at my request. Their mouths fumble the multisyllabic word, producing the cutest versions. I…
“What do you do for a living?” Ahh, one of the most common questions asked upon meeting new people. I dread this moment. Do I tell them what I used to do? I was a marketing director, recruiter, and human resource machine. All of those titles sound decent. So, which…
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