Since my mother’s passing, I’ve dedicated my life to advocacy, research, and storytelling. I speak about diagnostic delays, clinical bias, and the need to believe patients, especially those from underserved communities. This feature by TMA was one of the first public pieces that helped me share her story. Read the full feature on The Myositis…
In 2024, I was honored to present my mother’s story at the Externally Led Patient-Focused Drug Development (EL-PFDD) meeting for adult dermatomyositis, hosted by The Myositis Association and Myositis Support and Understanding. My reflections and advocacy were included in the official Voice of the Patient Report, which documents the real experiences of people and families living with dermatomyositis. I was…