Finding My Voice: How Advocacy Changed My Life with Scleroderma

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 scleroderma began long before I had a diagnosis. In my early twenties, I lived with joint pain, severe GI issues, fevers, rashes, and reactions that never quite added up. Like so many of us, I was told it was anxiety, stress, or lifestyle-related, each symptom treated as unrelated as my life slowly changed. By 26, pain forced me to leave fine dining because I could no longer work on my feet. I pivoted into operations and eventually thrived as a Director of Operations, until my health unraveled again.

Despite a strong family history of autoimmune disease, I was repeatedly told I didn’t have one. I tried everything, spending tens of thousands of dollars searching for answers. Still, no diagnosis.

In 2014, at 37, everything changed overnight. I was hospitalized for ten days with gangrene in both hands, blood clots, and unmanageable pain, and discharged with “undefined autoimmune disease.” Years later, specialized testing finally revealed the truth: systemic scleroderma with myositis overlap, driven by PM/SCL-75 and PM/SCL-100 antibodies, which are found in fewer than 6% of Scleroderma patients.

With it came interstitial lung disease, rheumatoid arthritis, and later Dermatomyositis. I had been my mother’s caregiver at the end of her life, so I understood what this could mean. Treatments left me bedridden. Insurance changes took away medications. I was sent home from ERs because “we don’t treat chronic,” while damage progressed.

Like many of us, I stayed outwardly high-functioning until I couldn’t. Did you push through longer than you should have because you had to?

By 2024, ten years into my diagnosis, progression forced me to stop working entirely. I’m still navigating the long and uncertain disability process.

Advocacy entered my life at a moment when so much had been taken away.

Becoming part of the scleroderma advocacy community helped me realize that my experiences, both the failures and the hard-won successes, could be used to improve outcomes for others. Awareness saves lives. According to the American Autoimmune Related Diseases Association, the average time to diagnosis for autoimmune disease is 4.5 years, with patients typically seeing four doctors. I often wonder how different my trajectory might have been with earlier diagnosis and treatment.

How long did it take for you to get answers?

How many doctors did you see before you were heard?

One of my first advocacy efforts was small but intentional. During visits to Northwestern in downtown Chicago, I distributed postcards offering free continuing medical education credits to healthcare professionals. I didn’t feel like I was bothering anyone. They were grateful, and many told me how relevant the training was, especially those working with rare disease patients who often feel unsupported. Those moments reinforced something important: advocacy doesn’t always require a microphone; it’s about showing up in a way that works for you.

That lesson was amplified when I attended the We the Patients Fly-In with Patients Rising last summer. Standing alongside other patients in Washington, D.C., I witnessed the power of patient voices in policy conversations. In congressional offices, we shared real-world stories about step therapy, insurance denials, delayed diagnoses, and fragmented care. For the first time, I truly saw how lived experience could shape legislation. That experience was deeply personal. My late uncle served in Congress for 25 years. Just days after his funeral, I learned I’d received a scholarship to attend the fly-In. It felt like serendipity and a reminder that advocacy is a legacy we carry forward.

Since becoming an advocate, I’ve found new ways to grow and contribute. After completing masterclasses in scleroderma and legislative advocacy, I became a member of the Patients Rising Patient Senate, developing my skills and helping others tell their stories.

Scleroderma patients are often misdiagnosed, mis-prescribed, and shuffled between specialists. We face gaps in research funding, provider education, and access to care, even in cities with world-class medical institutions. If navigating this system is difficult for someone with my education and professional background, I know how much harder it is for others.

This is why each of us matters.

What is just one thing you could do to advocate?

Advocacy does not require perfection, expertise, or endless energy. It requires participation. It can look like sharing your story, contacting a legislator, educating a provider, or supporting research and awareness efforts. After years of feeling isolated, advocacy has given me community, growth, and inspiration.

If you are living with scleroderma, caring for someone who is, or walking alongside this community in any way, I encourage you to get involved at whatever level feels possible. Your experience matters. Your voice matters. Together, we can improve diagnosis, treatment, and quality of life for everyone affected by scleroderma.

Author Bio:

Mary is a Chicago-based artist, advocate, and rare-disease powerhouse. Living with systemic scleroderma (the rarest of rare kind), she channels grit, humor, and heart into advocacy, awareness, and mixed-media art using collage and metal. When she’s not educating medical professionals or heading to D.C. to amplify patient voices, she’s finding joy, creating beauty, and proving that purpose can emerge from even the toughest detours.