CHICAGO (CBS) — As Chicago’s unofficial running season kicks off Sunday with the Shamrock Shuffle, one young woman taking part will suffer more than the usual minor blisters on her feet.

Rachael Wrobel, 25, is coming to Chicago from Ann Arbor, Michigan, to run the 8K course downtown, despite suffering a rare congenital skin disease called epidermolysis bullosa, or EB, which causes the skin to shear off or blister at the slightest touch.

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“We’re frequently called the butterfly children, as our skin is fragile as a butterfly’s wings,” she said.

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The only treatment is time-consuming daily bandaging. Wroebel said running will be painful.

“Some people have trouble walking. It depends on the areas that are affected. For me, I’ve had an open wound on my back since I was 3,” she said.

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Wrobel said she’s running to raise awareness of EB, and raise money for the EB Research Partnership team, which is searching for a cure.