When he told me our daughter’s diagnosis was “neuromyelitis optica,” a rare autoimmune disease that attacks the central nervous system, my heart didn’t just sink. It fuels our rare disease advocacy, shapes our shared mission and deepens our gratitude for each new day. The author with her daughter Nell on the beach 2.5 years after her diagnosis. Maggie Kang, M.D., is a physician, TEDx speaker, resilience and healthcare coach, and rare disease advocate. After her daughter’s rare disease diagnosis, she writes and speaks about grief, growth and finding meaning in the face of life’s disruptions.
