For over a decade, Carla has battled eosinophilic fasciitis—a rare disease that began with a simple rash on her back but has transformed her life in ways no one should have to endure. Once an active cyclist who lovingly cared for her handicapped daughter and served on multiple nonprofit boards, Carla now struggles with skin so tight and painful it feels like "wooden legs," causing her to fall regularly and live in constant fear of a devastating hip fracture. The disease has stolen so much from her—the ability to feel her own touch, the confidence to wear clothing that shows her discolored and scarred skin, and most heartbreakingly, the capacity to care for her disabled daughter, who had to be moved to full-time care because Carla could no longer provide the support she desperately wanted to give. Despite trying multiple treatments over the years, from prednisone that caused infected sores to methotrexate with limited success, Carla continues to fight, currently finding some hope with Dupixent injections that have reduced her pain and eosinophil counts, though the visible effects remain minimal. In a cruel twist of fate, just over a year ago, one of Carla's other daughters was also diagnosed with eosinophilic fasciitis, forcing this family to face the reality that this devastating disease may now impact two generations. Carla’s journey exemplifies the devastating impact of rare diseases and the urgent need for research that could prevent others from losing the life they once knew to conditions that remain largely mysterious to medical science.

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