MONTGOMERY, Ohio (WKRC) – A Montgomery man born with a rare genetic disorder that leaves skin as fragile as a butterfly’s wing has helped inspire federal legislation aimed at reducing the high cost of care for families nationwide.
Shane DiGiovanna was born with epidermolysis bullosa, or EB, a condition he described as “often called the worst disease you’ve never heard of.” He said it is also known as “the butterfly disease because, you know, the idea is that people with EB, their skin is as fragile as a butterfly’s wing.”
EB prevents the body from properly forming skin. DiGiovanna was born without skin on his left leg. The disorder affects about one in every 200,000 births nationally and requires constant care and bandaging to help protect children and young adults.
DiGiovanna’s mother, Patsy McCormick, showed the equipment needed to care for her son, saying bandages alone can cost up to $80,000 a month…