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NL Chapter marks World Hemophilia Day

NL Chapter of Canadian Hemophilia Society, group photo at their camp. – Submitted photo

By Jaymie White Local Journalism Initiative Reporter

WEST COAST — World Hemophilia Day took place on Monday, Apr. 17, and this year’s theme was ‘Access for All: Prevention of bleeds as the global standard of care’. Hemophilia, usually an inherited bleeding disorder, is classified by the blood being unable to clot properly, resulting in sometimes spontaneous bleeding or bleeding after surgery and injuries. According to the Canadian Hemophilia Society, hemophilia A and B are both rare disorders. Hemophilia A is found in one in every 2,500 Canadians and hemophilia B is found in one in every 600 Canadians. The Newfoundland and Labrador Chapter of the Canadian Hemophilia Society is a grass roots, not-for-profit organization who aim to improve the quality of life of anyone with an inherited bleeding disorder, and President of the NL Chapter, Michael Barrett, said it’s like an extended family. “We’ve got a lot of things that we accomplish. The main thing I would say, for most of our members, is the community. The word family gets thrown around a lot, and that’s not lightly. We’re all, one way or another, dealing with a difficult condition, that would be hemophilia or some other inherited bleeding disorder,” said Barrett. “It’s a lot easier to face the hurdles that come along with that, and the challenges, when you’ve got people in your corner who’ve got your back, who’ve been through it, maybe know more about it than you do and can offer sage advice and everything else. At the end of the day we come together, we have a great time, good laughs, and it feels like a second family.” One of the priorities for the chapter is to ensure people are educated about inherited blood disorders. “Educators who want to know about the hemophiliacs who are in their care, obviously we would all love to have medical professionals who’ve got a solid understanding – and that’s nothing against nurses and doctors, it’s a rare condition – and there are many inherited bleeding disorders that fall under our purview,” said Barrett. “If you go to a medical center where they don’t have a lot of experience, they might not recognize the signs quickly. They might want to do an x-ray before they give the factor, so obviously we want medical professionals to be aware of how much there is to know, and maybe recognize there are things they don’t know.” The fact that a lot of the bleeding that can occur won’t necessarily be seen is a significant factor in ensuring people are educated about hemophilia. “One way or another, depending on whatever inherited bleeding disorder it is, it’s not that you bleed more, you’re going to bleed for longer,” said Barrett. “Bleeding is not really the issue if you can see it. For the most part, the big concern is the bleeding on the inside. Bleeding into your joints does permanent damage to all those tissues in your joints. A concussion, if you’ve got a bleeding disorder, can be really dangerous. Even bleeding into a muscle, if left untreated, a person can actually bleed out into their muscle and you wouldn’t even know.” The chapter also wants to focus on awareness and increasing their membership. “For the broader public, I think the main thing is to know that we’re here and to support us when we do our fundraising because that pays for important work, and if there’s anybody that someone knows who has an inherited bleeding disorder, the number one priority for us this year is capturing membership. This is a great organization, but an organization is only as great as its members, so we’re hoping to get the word out there and meet new members. We’re feeling a lot of energy. The pandemic was hard for most organizations like ours, but since things have opened up we’re feeling excited. We’re bringing our ‘A game’ to pretty much everything we’re doing. We’re getting recognized provincially as well as nationally, and we’re trying to push that momentum and get ourselves out there.” Barrett has personal experience with the healing and support offered within the community. “When we were starting out on our own journey. I had a son, a baby, with hemophilia and I didn’t know much about it. We were lukewarm about getting involved in the community and the day before our big hemophilia camp, my son had a bleed in his thigh. We discovered it late at night and it was a terrifying and difficult experience, and the nurse talked us into taking in the camp. It was closer to the hospital than our home. Meals would be handled, less driving, closer to the hospital in case we had to come back,” explained Barrett. “I didn’t want to face strangers. That’s a hurdle for people, and if there’s anyone ever in that situation, I hope they reach out because, when I walked into the hemophilia camp with my wife and son, people gathered around us. They understood where we were coming from and what we were going through, and it was just so easy and so pleasant. That weekend I signed up to be the communications director and I haven’t looked back. My wife is involved on the board. My son is too young, but he’s looking at getting involved when he’s old enough. We are very much a hemophilia family and the amount of good we’ve done and the amount of benefit we’ve gained has been immeasurable.” The NL Chapter is receiving recognition on a national scale for the work they are doing. “We’re getting three big awards this year. We’re very excited. When I was told by a lady that we were getting the chapter recognition award, which is a high honour, we really wanted that again so we could push that momentum and energy. She described us as a ‘very cool’ chapter,” said Barrett. “We are being recognized for our work as a chapter. We’ve also got a leadership award going to Ann Jerrett who is a long-time member who we unfortunately lost just before Christmas, and our clinic’s physiotherapist, Colleen Down, is also getting an award of appreciation, so we are coming home with some prizes from Niagara Falls this spring.” Support for the chapter and their cause could be seen circulating on social media on the 17th. “We’ve got a hashtag, NLWHD2023. People are wearing red. They’re wearing signs that say ‘ask me why I’m wearing red,’” said Barrett. “The point is to raise awareness, have the conversation, make ourselves seen, make ourselves known. To go along with that, the government building and the confederation building lit up red, a lot of MHAs wearing red and participating on social media. Tony Wakeham saying a few kind words on our behalf, we’re getting a lot of attention and it’s a very exciting time to be involved in this organization.” Outside of World Hemophilia Day the organization has a hemophilia camp that community members can try out, they have brochures available at treatment centres to let people know who they are and how to get involved, and in the summer the plan is to put together a photo book of their adventures to be offered in the fall. “I’m really glad that I took the leap. I had to be talked into it, but I’m super glad that I did. The organization does tremendous good,” said Barrett. “My son, who we are very proud of, is an 11-year-old hemophiliac, and without the support of the organization, we would never have had so much success. We had our first home infusion just before Easter. We’ve been training since he was born, and for the first time we could go to the hospital in Gander, got the product, brought it home. He had a bleed in his knee and we could administer it right there in our home. The alternative to that would be to go to the emergency room and you wait. Some emergency rooms, there is one doctor seeing a lot of people, and a six, eight, or twelve hour visit to the hospital is not unheard of. Learning to navigate that and self-advocate so you shorten those visits is important.” To get in contact with the NL Hemophilia Chapter or to get involved, you can send an email to hemophilianl@gmail.com, go to http://www.hemophilia.ca/newfoundland-and-labrador/, or find them on Facebook at Hemophilia NL.

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