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cover of episode “I just want new skin, Mom.” Courage in the face of a painful life with epidermolysis bullosa (EB)

“I just want new skin, Mom.” Courage in the face of a painful life with epidermolysis bullosa (EB)

2022/2/23
logo of podcast On Rare

On Rare

Shownotes Transcript

Brady is a five-year-old who is living with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic skin condition. His mother, Eileen, describes what it was like to discover that Brady has RDEB and tells us how she is both the mother of a brave, happy little boy and the nurse who causes him pain during his daily wound care. RDEB has changed their lives.

Sanuj Ravindran, M.D., executive chairman of BridgeBio’s Phoenix Tissue Repair, joins the conversation to talk about the condition and explain how EB affects the body internally and externally.