In this fifth story of Scleroderma Awareness month, Michael and Maddie share why they care about spreading awareness. Having lived with diabetes since age 8, Michael is no stranger to managing an autoimmune disease. After first noticing Raynaud’s symptoms while snowboarding in 2016, it took until April 2019 for a diagnosis—two weeks after he married Maddie. “I have systemic diffuse sclerosis which manifests in my lungs,” he says. They realized the urgency of his condition, systemic sclerosis-associated interstitial lung disease (ILD), as it became more difficult for Michael to breathe. He received a stem cell transplant in September of 2019 that, while harrowing, improved his lung capacity.
Maddie and Michael then moved to Arizona, so that he could be more comfortable in the heat. When first trying to find care, Maddie explains how the doctors didn’t “understand what he’s been through.” Thankfully, they soon found a new rheumatologist, someone who Maddie describes as “very research oriented, which is ideal for something as complicated as this.”
Another big shift was seeking support from a mental health professional. “I’m someone who normally bottles all that up and doesn’t really share it with anyone,” Michael says. “This was a big turning point for me where it was like, this is going to be the priority of my life is to figure out what’s wrong. Maddie says, “Every day we can wake up and just enjoy the fact that he feels OK is a victory.”
Throughout each new challenge, Maddie has actively advocated for Michael’s wellness. She thinks about how “overwhelming” this diagnosis can be and how hard it can be “to navigate all this by yourself.” Their involvement with a 12-step program as part of their shared recovery from alcoholism has also helped them stay grounded through this chronic illness journey. They express the relief of finding explanations, but it took time to find answers. Michael says, “People just aren’t aware of scleroderma. That’s why I’m very willing to tell my story.“
The SRF is focused on research that improves treatments and care for those suffering from scleroderma and associated complications, like ILD. Join Michael and Maddie as advocates for spreading awareness and #SayScleroderma.