Tina Boileau had no idea she was a rare disease carrier until her son Jonathan Pitre was born. Just one day after his birth, Jonathan’s skin started blistering and nobody knew why. It turned out to be Epidermolysis Bullosa, a rare disease also known as EB.
“They’re called butterfly children because their skin is as fragile as a butterfly’s wing,” explains Tina. “Even the lightest friction or trauma causes the skin to blister and shear off.” Symptoms are more than external, as the blistering can also affect patients’ ability to swallow. Doctors refer to it as the “most painful condition you’ve never heard of.”
“You take it one day at a time and you learn by trial and error,” she says. “The little things that we take for granted: walking, sitting, and eating, are very painful for EB kids.”
Tina is currently the President of DEBRA Canada, a registered non-profit charitable organization that advocates and supports EB families. “It can be difficult to get the proper assistance and supplies for a child”, recalls Tina. It’s even more challenging for adults. Provincial health coverage is often drastically reduced leaving older patients financially strapped to cover the cost of their wound care needs.
Through DEBRA Canada’s programs and services for patient members, families find support and discover they’re not alone. Jonathan, now 17, has become an Ambassador to help spread awareness.
