Staying Alive With Scleroderma – a Column by Amy Gietzen

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…

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…

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,…

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…

Scleroderma comes with a plethora of uncommon and unbearable symptoms that may arise before or after diagnosis. For the first five years that I was living with scleroderma, I didn’t respond well to oral medications, causing my disease to worsen. My skin felt like that of a snake,…

I need a root canal! I have escaped the drama of this procedure for over 40 years, but now my fate is sealed. Before my scleroderma diagnosis, people would actually compliment me on my smile and my straight, perfect teeth. I would only visit the dental office for…

As a child, I constantly felt like I received the short end of the stick. In my immature mind, my older sister was praised up and down and showered with gifts, and my baby brother was cherished as the first male child who could do no wrong. Being the…