Danielle McCully

Danielle McCully

Canada

April 17 is World Hemophilia Day. This disorder is near and dear to my heart. I’m not looking for pity but rather to educate on the impact it can have on a persons life and their family. It’s much more then just a cut that doesn’t stop bleeding. As far as we know, hemophilia started with my dad and he was severe. At a time when they knew very little about it. He spent a good portion of his short life in the hospital. He almost died twice by the age of twelve; suffered many joint bleeds leading to chronic stiffness, arthritis and pain. He died at 35 years of age like most haemophiliacs of that time, due to contaminated blood that he was given that was suppose to help him. For me, growing up as a child I knew I was a carrier of hemophilia and that one day might also have children effected by the disorder. In my early 20’s I was diagnosed with mild hemophilia. The bruises, the unexplained ankle injuries, the heavy menstural periods, the anemia all finally made sense. Hemophilia complicates a couples decision to have children, the labour and delivery process and in my life the way I raise my children. I was blessed with a daughter with mild hemophilia and a son with severe. We are lucky in Canada. To have access to free healthcare and treatment. Many countries do not, people suffer and some die. Hemophilia is very expensive to treat. I wouldn’t change anything in the world for my sweet kids but It means many many clinics appointments, surgeries, hospital stays, 3x weekly IV injections, increased anxiety and stress, safety protocols, stigma, the list goes on. As you can see It’s so much more then a cut that doesn’t stop bleeding.

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Danielle McCully

Canada

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