Living with a rare disease like Diffuse Scleroderma can feel overwhelming, isolating, and extremely frightening- especially in the early days of the diagnosis when you have so many questions that are unanswered. When I was diagnosed, I quickly realized that understanding this disease would take more than just Doctor’s appointments, and test results. It would take a community, shared experiences, and trusted education of this rare disease.
The National Scleroderma Foundation has played an important role in helping me to navigate this diagnosis. Through the educational resources they provide on their website, Facebook, YouTube channel, Scleroderma Connections newsletter, conferences and the many webinars that can be found through the Foundation – I have gained a clearer understanding of what this disease is and the numerous ways that it can progress, and also what proactive steps that I can take. Having access to reliable, disease specific information has helped replace my fear with the power of knowledge.
Equally impactful are the Foundation’s support groups. Whether meeting in person or virtually, being surrounded by others who truly understand the challenges of living with this disease is incredibly helpful. In these gatherings, I have found a family that offers encouragement, support, and reassurance, reminding me that I am not alone on this journey.
Together, the National Scleroderma Foundation and the support groups have given me more than information- they have given me strength, connection, and a sense of belonging. They have helped me learn to advocate for myself and others, and to continue moving forward with resilience. Because of this community, I face my rare diagnosis with greater confidence, understanding, and hope for the future to find a cure for Scleroderma.
– Anitra Chadwick, Scleroderma Warrior, Heartland Chapter