Check out this video from our respected charity Hemophilia Ontario.
Click to see video transcript
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.
We found out when I was really young, a couple of months old maybe. Hemophilia runs in my mum’s family.
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.
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.
Like many other disorders, there’s lots of other disease and life events that come along, that compound the difficulties with the bleeding disorder.
I have arthritis in my ankles and so that has affected what activities I can do, sports and that sort of thing.
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.
You really have to take accountability of your health and make sure that you can still walk when you’re sixty.
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.
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.
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.
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.
The education can’t stop, the support can’t stop, whether that’s an individual member or a family.
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.
We were one of the lucky ones to get started with Federated Health Charities. The advantages is that we’re working together.
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.
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.
Federated Health Charities
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