Background/Purpose: While living in Tucson, Arizona in 2006, and caring to our 1-year-old son, I noticed painful ulcers on my red, swollen, and tight fingertips. The pain became unbearable, and it took nearly 6 months before I finally diagnosed with scleroderma in 2007. I could hardly pronounce or understand the word, but I knew I couldn’t ignore it. After reaching a point of exhaustion, we relocated to Michigan to be with family and friends. That move became a turning point. In Michigan, I found a supportive community and discovered a new purpose. Although I can no longer work full-time, I became a patient partner in research to help make sure patients’ voices are reflected in studies. I am also a trained peer mentor and find joy in connecting with others living with scleroderma. By sharing my experiences, I hope others feel less alone in what can be an isolating journey. This work has given me a renewed purpose, and I am dedicated to supporting others on their journey with scleroderma.

Intervention: Living with a rare disease like scleroderma can be isolating, especially when symptoms are invisible to others and we “don’t look sick.”  This invisibility can make it hard to manage daily life and feel understood. I’ve found that combining peer support and building a strong community connections help address not just the physical symptoms, but also the emotional and social toll of living with scleroderma. As a trained peer mentor and a peer health coach in the RENEW (Resilience-building Energy management to Enhance Well-being) intervention, I’ve supported others in building resilience and managing energy to improve their quality of life. I also co-founded Scleroderma Backers, an online community that support patients with nearly 900 members, which offers a safe space for connection, questions, and shared understanding. Through RENEW and Scleroderma Backers, I’ve seen how support from those who “get it” can foster hope and promote health behaviors.

Maintenance: Through ongoing connections, whether in RENEW, the Scleroderma Backers, or extended community, I’ve learned to better advocate for myself, adjust to changing roles, and stay engaged in my care. These non-clinical approaches have strengthened my well-being, increased my confidence in navigating daily challenges, and reduced feelings of isolation.

Quality of Life: Today, my quality of life is much more balanced and fulfilling than it was at the time of my diagnosis. While I still face daily challenges from scleroderma, I’ve learned how to manage my symptoms, set realistic goals, and lean on a strong support system. Being actively involved in peer support and patient-centered research gives me purpose and connection that empowers and inspires me to help others on their journey.

Takeaway: This abstract highlights the importance of integrating peer support into care to inspire self-care, foster meaningful connections, and reduce isolation. It also emphasizes the value of comprehensive care that support overall well-being. As patients find innovative ways to manage their conditions, healthcare providers are crucial in promoting these strategies. These insights benefit various rheumatic conditions, strengthening support systems that empower patients and enhance overall well-being.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/breaking-through-sclerodermas-invisible-struggles-from-isolation-to-connection/