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As a woman with scleroderma, I’ve faced many unknowns regarding my body and health over the last 21 years. Every day is a new adventure in my own “series of unfortunate events.” Since my diagnosis, I’ve restructured my life to make my health a priority and become hyperaware of…

How many times have you asked yourself, “Is this scleroderma?” Odd sensations, abnormal changes, pain, and even visible deformities — there’s no shortage of strange symptoms with this disease. I used to embark on a fruitless journey to discover answers, spending hours researching and probing fellow patients in support…

About a month ago, I popped into Target. I grabbed a cart and started to sanitize it. While wiping the handle, I heard laughter behind me. A group of teenage girls were waiting for the sanitizer wipes. Now, I know I don’t necessarily look sick. If you knew nothing…

The day after my high school prom, a group of us went to an amusement park to continue celebrating. After navigating the ticket line, I noticed a new attraction that looked like one of those free-fall water slides. As I looked up at the endless zigzag of stairs while shielding…

Lately, my life has been at a standstill. For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine. Six years after my diagnosis,…

“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive. I came across this quote again, eight years later. Only this time, I realized…

I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury. Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a…

When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of. As time passed and I slowly grew…

“I used to …” I found myself saying that more and more as the years went on, despite my best efforts to maintain normalcy more than 20 years after being diagnosed with scleroderma. After that diagnosis in 2001, I began to see myself changing: The things I’d once enjoyed…

Most of the time, I try to remain positive and open-minded. I learned this a long time ago while dealing with the ups and downs of scleroderma. If I can push through the painful emotions that scleroderma causes, I can live a much more enjoyable life with a positive…