Staying Alive With Scleroderma — Amy Gietzen

Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment…

My experience with scleroderma has been a mashup of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for both my support system and me. At times I’ve felt…

I was diagnosed with scleroderma in 2001. Finding out I was sick changed my whole life, and everyone’s lives around me. My parents, my siblings, my friends, my co-workers, my boss, and even…

I would venture to guess that most people wake up every morning feeling refreshed after a good night’s sleep. They are probably bright-eyed and bushy-tailed, reenergized, and ready to take on the new day.

I sometimes find myself envious of other people. I’ll look at a person walking down the street and think, “What if my life path was different?” It’s not uncommon for a person with…

I remember as a child having no fear. I would throw myself headfirst into any and everything, not caring whether it was safe or the right thing to do. I just let go of…

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…

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…

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…

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,…

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…

“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.