“My journey to diagnosis was long and frustrating,” says Monika H. (dx 2017). “The first symptoms appeared as swelling and tingling in my fingers and toes, which I initially brushed off. My doctor thought it was carpal tunnel, then rheumatoid arthritis, but none of those felt quite right. I knew something else was going on.”
It took multiple specialists and months of uncertainty before she was referred to a rheumatologist. “After several tests—including bloodwork, lung function tests, and a skin evaluation—I was diagnosed with systemic sclerosis, also known as scleroderma, in March 2017,” Monika recalls. “By that time, my fingers were stiff and puffy, and I was already dealing with the painful effects of Raynaud’s. It was a relief to finally know what was happening to my body, but at the same time, hearing that there was no cure was terrifying.”
Before scleroderma, she spent more than 20 years as a chef and cake artist. “It was my dream job. I even competed on national TV shows,” Monika says. “But scleroderma robbed me of my ability to use my hands, and I had to give up my culinary career. That was devastating. I went from creating beautiful, intricate cakes to struggling to hold a kitchen utensil.”
Despite the loss, she has found new outlets for her creativity. “I refuse to let the disease define me,” Monika says. “I’ve found new passions, like painting, that allow me to keep my creativity alive while also raising awareness for scleroderma.”
She hopes more people understand that scleroderma is far more than a skin disease. “It can affect your organs, your mobility, and your mental health,” she explains. “It’s an invisible illness in many ways, so people may not realize the struggle behind what they see.”
Raising awareness is personal for Monika. “Scleroderma is often misdiagnosed or undiagnosed for years,” she says. “The more awareness we can bring to the disease, the more people will recognize symptoms early and get the help they need. Awareness also leads to compassion, support, and research funding—which are all vital.”
“There’s no cure yet,” she adds, “but research gives us hope. Every discovery brings us one step closer to better treatments—and one day, a cure.”
