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.
A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly. When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold…
After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?” While many of the feelings I…
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable. But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times…
I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a…
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