Globe Fest promotes hemophilia awareness

Globe Fest, June 12 at the Kinsmen Community Centre, is a fundraiser for the Canadian Hemophilia Society and the Ponoka Hospital and Care Centre

Ponoka residents can sample an assortment of tastes from around the world and get a better understanding of life as a hemophiliac at an upcoming special event.

Globe Fest, June 12 at the Kinsmen Community Centre, is a fundraiser for the Canadian Hemophilia Society and the Ponoka Hospital and Care Centre.

The evening features foods from a variety of ethnic groups represented in Ponoka, such as Chinese, African, Moroccan, Italian, Guyanese, Filipino and Mexican. There will also be a silent auction and other fundraising activities. A spokesman from the Canadian Hemophilia Society will make a presentation.

Devi Kustiak and her husband, Ken, both nurses, are organizing the event. Their youngest son, Gabriel, 5, has hemophilia. Kustiak said there are eight or nine other “bleeders” in Ponoka, which is unusual since hemophilia A is found in one in 10,000 people and von Willebrand disease, the most common bleeding disorder, affects one in 1,000 people.

“We’re passionate about this cause,” she said. “We need to raise awareness as well as more funds to find a cure.”

Women carry the gene for hemophilia and it is mostly males who have hemophilia. Von Willebrand disease affects more women.

“I am a bleeder as well but it’s not as bad as hemophilia,” Kustiak said.

The Canadian Hemophilia Society is very supportive to local families, she said, and is a good source of medical information for those recently diagnosed with a bleeding disorder. Doctors are not always familiar with the latest developments because the disease is so rare.

The Kustiaks have kept up with research advancements and provided in-service training for schoolteachers.

There is a misconception, she said, that hemophiliacs bleed faster when they are cut and could die from severe blood loss. It’s more a case that the hemophiliac’s blood doesn’t clot as quickly and the person will bleed longer. Internal bleeding can be fatal.

Hemophiliacs need regular infusions of a clotting factor into their system to help mitigate the affects of the disease. Kustiak’s son is a moderate hemophiliac and needs his clotting factor dose when he is hurt severely; that’s easier to tell when he’s cut than when he gets a bump or a bruise.

“We have chosen to let Gabriel do whatever he wants to do and deal with the consequences,” Kustiak explained. “We have to be vigilant and watchful, making sure we check him once a day for bumps and bruises. Sometimes it’s difficult if he gets hurt and doesn’t tell.”

Tickets can be purchased in advance at The Walrus and the Carpenter and The Ponoka Book Store, and at the door June 12.