This year’s Federated Health Charities campaign runs from April 3, 2023, to June 30, 2023. During the campaign, we are highlighting how each of our 21 charities works to improve the health and well-being of people across our province.
The 16th charity in our spotlight is Hemophilia Ontario. Since 1956, Hemophilia Ontario has worked to improve the health and quality of life for all people with inherited bleeding disorders and to find a cure.
Matthew Maynard found out about his diagnosis when his brother was born. “I ended up with two brothers and a sister, both brothers having hemophilia,” he says. “It often meant for my parents that one or the other of us was in hospital.”
Inherited bleeding disorders are a family of diseases in which blood proteins or platelets that help the blood clot are missing or do not function properly, resulting in prolonged bleeding. These conditions include hemophilia A and B, von Willebrand disease, rare clotting factor deficiencies and inherited platelet disorders. These conditions are usually inherited genetically from parents but also appear spontaneously, and in rare cases can even be acquired.
“Basically it means that we don’t clot regularly,” Matthew says. “Now, you might assume that [that means] a cut, but actually the cuts are okay, it’s the internal bleeding that’s the most threatening.”
People with bleeding disorders can bleed for longer than normal, and some may experience spontaneous bleeding into joints, muscles, or other parts of their bodies. The main risk for children and adults with these disorders is internal bleeding, mainly into muscles, joints, or vital organs. Women with bleeding disorders face additional risks, such as heavy menstrual periods, which can lead to reduced quality of life and the risk of hemorrhage during childbirth. For all people with inherited bleeding disorders, prolonged bleeding after injury or surgery can be life-threatening.
There is kind of a fear: what will I be faced with?
While hemophilia is probably the most widely-known bleeding disorder, the most common bleeding disorder is von Willebrand disease (VWD). While hemophilia affects 1 in 10,000 people, as many as 1 in 100 may have VWD. People with VWD may not know that they have the disorder because their bleeding symptoms are mild and, as a result, many cases of VWD go undiagnosed. While VWD affects men and women equally, women are more likely to identify and experience bleeding symptoms.
Hemophilia Ontario provides support, education and community for people living with bleeding disorders, including financial assistance for Hemophilia Ontario members who need help managing costs associated with the treatment and management of their bleeding disorder. In particular, Hemophilia Ontario camps offer children, youth, and families living with inherited bleeding disorders the opportunity to experience camp and a variety of physical activities in a fun, safe, and supported environment.
“I think the important part was that we got together with other families, that we saw that, hey, we’re not alone,” Matthew says. “And I think that’s one of the big things that Hemophilia Ontario offers, is to say, hey, you’re not alone.”
Hemophilia Ontario has been a Federated Health Charities member since 1984. To learn more about Hemophilia Ontario, please visit Hemophilia Ontario -An inherited bleeding disorder community.
To make a payroll pledge or donation to support Hemophilia Ontario and Federated Health Charities, please visit Federated Health Charities.
