Scleroderma
Truth

Living with scleroderma-related ILD has changed Carol's life in ways she never expected. She has gone from cycling through the Colorado mountains to navigating the world with supplemental oxygen. But there has also been Rwanda. Ecuador. Madagascar. The Galápagos. Wildlife photography. And a whole lot of adventure. Carol shares her honest story about living with ILD, traveling with oxygen, the challenges that come with it, and why she is still planning her next trip.

Learn from Kimberly Gonzalez about how she has lived with scleroderma.

Learn about being the parent of a child with scleroderma and why Pamela chose to be a scleroderma advocate.

Learn about growing up with scleroderma from Grace Pour, scleroderma warrior and advocate. This article will be insightful for any scleroderma parent.

Have you ever found yourself wishing you had a different illness? In her powerful new blog, Donna shares the raw emotions of living with scleroderma-related lung disease, including the unexpected feeling of "disease envy" after hearing her doctor recover from bronchitis in just a few days. If you've ever felt frustrated, isolated, or guilty for the emotions chronic illness can bring, this blog is for you. Discover why these difficult thoughts are more common than we admit.

Learn helpful tips on how to navigate heading to the doctors office with scleroderma

Learn why Milana Millan, a scleroderma warrior, kept working to maintain support after her diagnosis.

Learn about Monika Hilton, Scleroderma warrior, advocate, artist, and author and how she celebrates and activates for Scleroderma Awarness Month

Living with scleroderma and pulmonary arterial hypertension, along with the tangled gut, heart failure, and other complications they bring, makes keeping up with appointments, medications, side effects, and monitoring a full-time job.

Learn about the transition from pediatric to adult scleroderma care and the story of Tiffany Shank, Scleroderma Warrior and Advocate

Every year, people show up with purpose, with love, with grief, with hope, and often with a team behind them. At our Walk to Cure Scleroderma events there is no single “right” reason to participate. Teams are formed from every corner of life, and behind each one is a story. Here are just a few of the impactful stories from our community.

By Dolores Pfeuffer-Scherer In August, my mother passed away. She was diagnosed as terminal and died less than three months later. As she slipped away, one of her last searches on her phone was looking up the symptoms of scleroderma and how to manage them. In other words, my mother was worrying about me until the end. That’s incredibly powerful. As well as motivating. It forced me to think about how I am managing scleroderma. My verdict? A solid “C” was it. I decided I needed

Learn how life-changing the right doctor can be for your scleroderma journey

Over the past few weeks, scleroderma advocates have been sharing their stories in advocacy meetings across the country, virtually and in person in Chicago, Denver, and Washington, D.C.

learn about how Shannon Montgomery, a scleroderma patient, uses AI to understand her diagnosis and research how to optimize her routine.

For Black History Month, we’re spotlighting powerful voices in the scleroderma community as we note the outsized impact the disease has on African Americans. Research and medical experts tell us that scleroderma is more prevalent and severe among African Americans 1 and that Blacks — especially women — are more likely to be diagnosed at younger ages 2 . We spoke to two African American scleroderma warriors: Josette Frye-Mitchell and Monika Hilton. Josette pushes for scler

I didn’t set out to become an advocate. Like many people living with Scleroderma, I was simply trying to survive physically, emotionally, and professionally, in a healthcare system that often wasn’t built for patients like me. Advocacy found me when I needed it most, and in return, it gave me something I had lost along the way: purpose. Even in the toughest moments, what’s one silver lining or source of strength you’ve discovered living with Scleroderma? My journey with scler

Learn how Jolie restarted her life and found hope through advocacy and founding her organization, Breathtaking Awareness

With our fresh start in 2026, hear from scleroderma patients and learn how they find hope, community, and possibility with scleroderma.

Welcome to Scleroderma Truth, the official blog of the Scleroderma Foundation of Greater Chicago. We are here to share real stories of patients and connection within the scleroderma community. Welcome!