Epidermolysis Bullosa: Great Pain and Gigantic Love

Silvia Corradin's son was born with Epidermolysis Bullosa (EB), a group of rare genetic conditions that cause the skin to be very fragile and to blister easily. EB can range from mild to life-threatening. Silvia shares the experience of raising a child with EB — the daily wound care routines, the relentless demands of caregiving, the moments of grief, and the profound love at the center of it all. She reflects on what it means to advocate fiercely for a child whose condition is little understood by the medical professionals they encounter.