Epidermolysis bullosa fundraiser at Grouse Mountain aims to raise awareness

A rare skin disorder that causes extreme pain for those who suffer from it was the focus of a fundraiser at Grouse Mountain on Friday.

Condition brought to light by 14-year-old Jonathan Pitre in 2014

Deanna Molinaro (right) suffers from EB, a rare skin disorder. She and her mother Fran are in Vancouver to attend a fundraiser for the condition. (CBC)

A rare skin disorder that causes extreme pain for those who suffer from it was the focus of a fundraiser at Grouse Mountain on Friday. 

Epidermolysis bullosa, or EB, is a skin disorder caused by a lack of collagen — the glue that keeps skin together. The lightest touch can cause wounds comparable to third-degree burns.

EB affects only one in 30,000 people. There is no cure. 

"I have to do dressing changes four times a week," said DeannaMolinaro, who suffers from the condition.

"Each one takes four hours, and then every morning I have to do what needs to be changed before the day starts, so that's another hour."

Molinaro and her family are visiting Vancouver from  Stoney Creek, Ont. to help bring awareness to the disease.

"It's heart wrenching, when you see the stares. You want people out there to know there's things that can cause such a severe disability," said Fran Molinaro, Deanna's mother. 

Jonathan Pitre of Russell, Ont., and his dog, Gibson. Jonathan has a rare skin disorder called epidermolysis bullosa. Young people with EB are sometimes referred to as "butterfly children," comparing their fragile skin to butterfly wings. (submitted by Tina Boileau)

The condition was thrust into the spotlight in 2014, when the Ottawa Senators signed Jonathan Pitre to a temporary scouting contract. The 14-year-old suffers from EB as well, and his story made headlines around the globe.

Tina Boileau, Pitre's mother, also attended the fundraiser. She says the attention her son received has helped educate people about the condition.

"People have approached Jonathan and they know that he has EB," she said. "Even crossing the border into the U.S. I think it opened up people's eyes to what EB is all about." 

With files from Brenna Rose

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