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…
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…
Date night with my husband resulted in mounds of clothing piling up on the bench in my closet. I was having a meltdown similar to that of a teenage girl with a zit on prom night. Nothing fit. I couldn’t zip up skirts or button pants. My stomach had suddenly…
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