BLOOD matters - Société Canadienne de l'Hémophilie

CWOR
Aging with Hemophilia*
by Robert Dinsdale, Oakville ON
*Please note that the opinions, beliefs and
stories shared in this section belong to the
author, and not to Hemophilia Ontario –
Central West Ontario Region.
I have been asked to write an article about aging with hemophilia, so I
thought the best way to do this is to start with my history and how the actions
of my youth impact me today.
I am a clinically severe Factor IX hemophiliac. I was born in Toronto in
1954 and grew up in a very different time from now in terms of the understanding
and treatment of hemophilia. The first indication of my bleeding
disorder was when I was two and had a bleed that led to my diagnosis. The
first major impact of my being a hemophiliac was when I was eight years
old; I was hit in the left eye by a badminton racquet while playing doubles at
a family gathering. I began bleeding into the back of my eye—I believe it is
called hyphema. It continued to bleed internally with no indication of stopping,
and I went to The Hospital for Sick Children in Toronto where they gave
me unit after unit of plasma to try and get some clotting started. As a result,
I pretty much spent my summer in the hospital that year and lost the sight
in my left eye. The day I came home from the hospital is really my first clear
childhood memory, and then of course going to school that September and
having people look at me with what I now called my bad eye—the bleeding
and damage had left me with one pretty colourful eye. It wasn’t until I was
19 that technology and the development of clotting factor allowed me to have
my bad eye removed and an artificial one made.
When I was young there wasn’t a specific treatment for hemophilia as we
know it today. In fact, the only treatment was ice and rest, and if you were hospitalized
you would be given fresh frozen plasma in the hope that the clotting
factor in it would help stop the bleeding. So when you had a bleed you ended
Blood Matters Fall 2010 /21