Welcome to Scleroderma Truth

You don’t wake up one day expecting a rare disease to change everything. But for those living with scleroderma, life’s rules get rewritten. Sometimes in the form of an all-consuming health crisis, and other times slowly, subtly, sometimes it's invisible. The fatigue. The uncertainty. The isolation. The compounding impact of it all. And yet, these challenges make the moments of joy, connection, and healing mean so much more. A different life, yes, but one that is uniquely yours, filled with resilience, hope, and the promise of living fully.

Welcome to the Scleroderma Truth blog. A space where we speak openly, honestly, and unapologetically about what life with scleroderma really looks like. Where patients, caregivers, and advocates share stories, insights, and resources that are often missing from mainstream conversations. Where the challenges are acknowledged, and the victories are celebrated.

What you will find here:

• Real stories: From the frontlines of daily life with scleroderma.

• Actionable guidance and tips: Tips for symptom management, navigating healthcare, and self-advocacy.

• Community connection: Voices and experiences from people just like you.

• Awareness & advocacy: Helping others understand this rare disease and how to support those living with it.

• Whether you’re newly diagnosed, a long-time warrior, a caregiver, or simply curious to understand more, you’ve found your place. Share your story, connect with others, and let’s live boldly in the face of scleroderma.

Comment and share, and if you would like to contribute your voice, email info@stopscleroderma.org or call us at 312-660-1131.