Scleroderma is a disease that takes no prisoners. Not only does it attack the body and its vital organs, but it also causes the body to fight itself, wreaking havoc on skin cells, tissue, and the defense mechanisms that fight illnesses. I think of it as scleroderma…
A year is a long time to feel hopeless. Throughout my life, I have endured. I’ve taken my licks and kept moving in a positive direction. Even after I was diagnosed with scleroderma at the young age of 19, I remained blindly optimistic, no matter the potential outcome…
This column describes the author’s own experiences with eyedrops made from a patient’s own blood. Not everyone will have the same response to all treatments. Consult your doctor before starting or stopping a therapy. Every spring, instead of enjoying the sunny weather and the smell of freshly cut grass,…
We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise…
In 2018, I was asked to be a keynote speaker at an interprofessional education event (IPE) that aimed to educate graduate students in various healthcare disciplines about scleroderma. I’m a patient advocate who’s lived with the disease for more than two decades, and I pride myself on…
“Mama! Come quick!” my daughter called through sobbing tears. She’d been unwell for a few days and had developed a high fever that morning. I was already on high alert, and her cries for me were like sirens. As I was crouched down beside her as she lay on the…
Scleroderma is like a forest fire, raging from one body part to another. Flames of pain engulf me, leaving parts of me scorched and destroyed. For over two decades, I’ve been rebuilding my life from the ashes constantly left by scleroderma. I have fought through symptoms, pain, disability,…
I often see a butterfly symbol associated with various autoimmune diseases, including scleroderma. While some conditions, such as lupus, can cause a butterfly-shaped malar rash, my research hasn’t yielded any other explanations for this connection. However, I do have my own theory. Tucked safely away from the…
Silvia Petrozza is a powerhouse! Known as the Autoimmune Slayer, she has almost 1,700 Instagram followers and always seems to have her fingers in disease advocacy efforts in Canada. A mother of three, she also has her own business — impressive for a woman living with scleroderma…
Living with a chronic illness like scleroderma can be a constant challenge. Dealing with myriad doctor appointments, pharmacy runs, and symptoms is often time-consuming. Staying calm while managing this disease is easier said than done. One thing that’s helped me on this crazy journey is maintaining a positive attitude.
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