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…
Last year, I celebrated the 21st anniversary of my initial diagnosis of systemic scleroderma. Well, it wasn’t really a celebration, and I didn’t have a party with balloons and confetti. It was more of a moment of mourning for the life I had lived before my scleroderma diagnosis, followed by…
Living with scleroderma fatigue is unquestionably a roller coaster ride. One day I’ll be cleaning the house and taking care of my responsibilities, and the next, I’ll be under a blanket, recovering from taking care of those same responsibilities. The energy I had the previous day will be…
Ever since I was a child, my parents fostered in me a solid work ethic and a refusal to quit. Whether I was playing a musical instrument or competing in a spelling bee, my parents always taught me to never give up. They instilled in me strength to fight adversity.
Note: The headline of this story was updated April 19, 2022, to clarify that scleroderma isn’t becoming less rare, but rather awareness of the disease is increasing. One evening in January 2014, I answered a call from my doctor’s office. After going over my lab results, a nurse nonchalantly…
Get regular updates to your inbox.