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I was born in the spring of 1953 in the suburbs of Pittsburgh, PA, the first born for my parents. After my birth when I arrived home from the hospital my mother made the frightening discovery that my diaper was full of blood. I was immediately rushed back to the hospital at which time my diagnosis was confirmed Hemophilia Type A-moderate, although through the years I would present as severe. Hemophilia wasn’t completely foreign to my mother as she had grown up with a brother, my uncle, who was a hemophiliac. It is unknown though whether the family knew enough about the genetics of hemophilia to know that there was a chance I could be a hemophiliac. Also, this was during a time when she wouldn’t have known if I was even going to be a boy or girl until birth…
To read this autobiography in its entirety, download pdf.
Any person living with a chronic illness knows that we often must become our own advocates in the fight for our health and for fair and accessible treatment and insurance.
As someone with von Willebrand disease, a lifelong bleeding disorder characterized primarily by my blood failing to clot properly or perform as it should due to low levels of von Willebrand factor protein – I’ve spent years learning the ins and outs of the U.S. health care system, and the battles that patients like me go through to access lifesaving medications on a regular basis…
To read her story in its entirety, download pdf.