Staying Alive With Scleroderma — Amy Gietzen

My mom has always instilled in me that beauty is in the eye of the beholder. When I was a child, she’d say to me, “What may be beautiful to one isn’t always beautiful to another, but that’s OK because that’s what makes people unique.” Amy makes goofy faces…

The feeling of overheating while being cold at the same time isn’t an unfamiliar symptom to me. For almost a decade, I have dealt with hot flashes due to medication-induced menopause. However, severe sweating strictly at night with symptoms of extreme internal heat, clammy skin, sleeplessness, and cold…

For years now, I’ve lived with a broken heart. At times, it’s physically painful. My discomfort includes aches, sharp and stabbing pains, fluid retention, swelling in my extremities, and difficulty breathing. But living with a dysfunctional heart is nothing compared with the emotional toll my heart disease has left…

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,…

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…

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,…

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…

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…