Hemophilia Ontario
Hemophilia Ontario
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.
Matthew Maynard learned he had hemophilia 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.”
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?
Click to see video transcript
Matthew Maynard:
I found out about my diagnosis when my brother was born. I ended up with two brothers and a sister, both brothers having hemophilia.
It often meant for my parents that one or the other of us was in hospital.
Ian M:
We found out when I was really young, a couple of months old maybe. Hemophilia runs in my mum’s family.
Matthew Maynard:
Basically it means that we don’t clot regularly. Now, you might assume that that’s a cut, but actually the cuts are okay, it’s the internal bleeding that’s the most threatening.
Ian M:
You want to be active when you’re young, and you’re climbing on things and going outside. For everyone else, they just get back up, but for me, I get injured real easily. So it sort of put a damper on normal childhood activity.
Matthew Maynard:
Like many other disorders, there’s lots of other disease and life events that come along, that compound the difficulties with the bleeding disorder.
Ian M:
I have arthritis in my ankles and so that has affected what activities I can do, sports and that sort of thing.
Matthew Maynard:
Unfortunately in the eighties, we received concentrated blood products, and unfortunately those blood products contained both HIV and hepatitis. It’s often called the tainted blood tragedy.
The result was that both of my brothers passed away as a result of HIV.
Ian M:
You really have to take accountability of your health and make sure that you can still walk when you’re sixty.
Matthew Maynard:
There is kind of a fear: what will I be faced with? Will I end up with high blood pressure, joints that need to be replaced, surgeries that need to be done? It’s those kinds of things, yeah, they’re in the back of my mind.
Ian M:
With the help from Hemophilia Ontario, probably we would have a lot harder time as a family. I think that during those really difficult years, it sort of helped us just stay sane.
Matthew Maynard:
I think the important part was that we got together with other families, that we saw that, hey, we’re not alone. And I think that’s one of the big things that Hemophilia Ontario offers, is to say, hey, you’re not alone.
In many ways it’s the education, but I think the biggest part of it, is the community.
Ian M:
When I was in my early teens, we had Camp Wanakita, and that was amazing, to just get out and sort of get away from your parents in a normal camp environment, that normally, we wouldn’t be able to go to.
Matthew Maynard:
The education can’t stop, the support can’t stop, whether that’s an individual member or a family.
Ian M:
There’s a lot of medical coverage that we get through OHIP, but there’s also a lot of other things that we need. There’s education programs and there’s other things, just to make us feel, you know, normal.
Matthew Maynard:
We were one of the lucky ones to get started with Federated Health Charities. The advantages is that we’re working together.
Ian M:
It’s awesome that there’s a way of supporting these big charities in Ontario that all need things that we don’t necessarily get with our regular healthcare.
Matthew Maynard:
Consider how you’d like to impact your community. I think there’s lots of opportunities to make great choices about how you share your time and your resources. I think Federated Health is one of those that will immediately be rewarding too.
“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.”
Since 1984, Federated Health Charities has supported Hemophilia Ontario to improve the health and quality of life and find a cure for all people with inherited bleeding disorders.
Learn more about Hemophilia Ontario at Hemophilia Ontario -An inherited bleeding disorder community.
Donate to Federated Health Charities today to support a healthier Ontario and a world free from the pain and suffering of inherited bleeding disorders.
Click on the button below to make a donation to Hemophilia Ontario through Federated Health Charities
For general questions:
647-278-9861
federated.health.charities
@ontario.ca
Address
315 Front St. West, 5th Floor
Toronto, ON
M7A 0B8
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For general questions:
647-278-9861
federated.health.charities@ontario.ca
Address
315 Front St. West, 5th Floor
Toronto, ON
M7A 0B8
Follow us
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