When Shirley was diagnosed with scleroderma at just 29 years old, she had no idea how much her life was about to change. Now 62, she has spent over three decades navigating the challenges of this rare disease with grace, resilience, and an unwavering commitment to raising awareness.
What started with Raynaud’s phenomenon led to a referral to the Mayo Clinic, where she received her diagnosis. At the time, she and her husband had just purchased their first home in Green Bay, Wisconsin. Their sons were toddlers, and she was only seven years into her career as an IT professional. Life was busy, active, and full, but scleroderma quickly became a central part of it.
“Scleroderma didn’t stop us, but it slowed me down,” she said.
Despite the physical toll of the disease, including all five symptoms of CREST syndrome, lung fibrosis, interstitial lung disease (ILD), and pulmonary arterial hypertension (PAH), she continues to stay connected to the people and passions that bring her joy. Today, her two sons are grown and married, and she is a proud grandmother of three. Family time remains a priority, even when it means managing oxygen support to be able to travel to places like Jamaica and Antigua.
While she now uses oxygen 24/7, she continues to advocate, educate, and inspire. In fact, this year she played a key role in bringing greater awareness to the Green Bay community. She successfully requested a proclamation from the mayor declaring June as Scleroderma Awareness Month, and she helped coordinate plans to light the Ray Nitschke Memorial Bridge teal on June 28 in honor of those living with scleroderma.
She’ll be celebrating that night with her family at the Stepping Out to Cure Scleroderma event at the Wisconsin Timber Rattlers game, accompanied by her children, grandchildren, and friends who have stood by her every step of the way.
Her journey is a powerful reminder that while scleroderma can change your path, it doesn’t have to define your spirit.
Want to make a difference like Shirley? Learn more about how to request a proclamation or get involved in your community: Light Up Your City & Proclaim Your Support of Scleroderma Awareness Month – National Scleroderma Foundation