Columns

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…

Decades ago, you passed quietly through the background of everyone’s busy lives. My heart still aches for you, even more now. You see, I didn’t know what you were going through for all those painful years. Your invisible illness was just that — invisible. I didn’t understand it, and…

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…

I wonder if the “old Amy” thinks of me as much as I think of her. I miss her terribly. She seemed to slip away from me without me even saying goodbye. My heart aches for who she was and who I am now becoming. I didn’t ask for any…

As the meeting doors open, I’m met with the coolness of a windowless, air-conditioned room. Normally, I would welcome this gift on a sweltering summer day, but today is different. I immediately question the purity of the air I’m about to breathe in. I reluctantly enter and scan the room…

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…

Many books have been written about finding your true love. Yet, there’s not much guidance about finding the right doctors. I suppose this didn’t matter when I was healthy. Now that I’m chronically ill, the right doctor means life or death. However, when scleroderma forced me to seek out care…