She wasn’t my first. That bit of history belonged to Victor. Obsessed at the time with the suave and masterful Victor Newman character from the soap opera “The Young and the Restless,” I cuddled the floppy ball of fur that shared his name. Although he didn’t have any similar traits…
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…
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…
Like it or not, in many facets of life, money talks. For scleroderma research and development, the largest portion of funding comes from lawmakers in the U.S. Congress. Since 2016, David Murad has led advocacy efforts and served as director of chapter relations at the Scleroderma Foundation, a…
Someone once remarked that scleroderma is the “anti-glamorous” disease because it mainly affects menopausal women. But the condition also affects children, young adults, and men. In this column, we’ll hear from two extraordinary young women who are tackling scleroderma on their own terms. Amy Gietzen, 39, was diagnosed with scleroderma…
Although rheumatologists specializing in scleroderma are rare like the disease, they have something in common: passion. They’re passionate about understanding and managing the disease and compassionate toward those it affects. Dr. Nunzio Bottini is one of the foremost scleroderma researchers on the West Coast of the U.S. He…
When I first met Cyndy Martin, 58, I was impressed with her vitality and energy, but she had been severely affected by the ravages of scleroderma only a few years before. Meghan Newell Davis, 36, was a nutritionist and marathoner who ran Ironman triathlons. A new mom, she started to…
The first National Scleroderma Conference I went to was in Anaheim, California, in 2014. Not only was it one of the best organized major conferences I had ever attended — the number of workshops and amount of information was dazzling — but also it was great to meet so many…
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…
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