HEMOPHILIA DAY: Living with a bleeding disorder

Living with a bleeding disorder

HAMPDEN, Maine (NEWS CENTER) – World Hemophilia Day was a chance for those impacted by bleeding disorders to raise awareness all across the globe, including right here in Maine Monday.

The rare disorder impacts on about 20,000 men and very few women nationwide, according to the CDC.

For 9-year-old Quinn Packard of Hampden, it is a disorder that he has learned to live with. Still, it comes with challenges.

"Well I can't do sports because I have it, but I don't necessarily like sports,” he said.

He self-administers his clotting factor every other day with his mother at his side. The costly drugs enables his body to clot when it otherwise would not.

What most would thing as everyday scrapes and bumps, and more commonly internal joint bleeds, can be cause for concern.

It was a challenge Quinn’s mother Jill Packard never anticipated.

“The first three years of his life we were at the hospital or clinic 63 times for treatments,” she said. “There wasn't a single holiday that we didn't go."

An even more challenging realization: Packard is a “carrier” of a the gene that triggered Quinn’s deficiency—something she said was once frustrating.

She has since turned that frustration into something more in the hopes of helping other families. Packard is now the Executive Director of the Hemophilia Alliance of Maine—an organization based in August with the aim of helping some 300 families impacted across the state.

"It’s to show how important community is and how important access is and that really that's what we're going to need going forward and that bleeding disorder community not only in Maine, but nationally really understand what it means to connect with each other,” she said.

She said the connection is so important to the state because of its size often means access to care and education is limited.

The organization held events in South Portland and Bangor Monday inviting more than one hundred people together to learn and spread awareness.

For Quinn, who admits there are some things he cannot do, he said the disorder does not define him even among friends.

"Some of them I tell them but they forget basically,” he said.\

A strong little boy who proves an often invisible disorder can be taken in stride.

© 2017 WLBZ-TV


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