I was diagnosed in 1978 when I was 28 with a rare blood condition called paroxysmal nocturnal haemoglobinuria (pnh) which only 1 in a million people have. Over the 40+ years since then I've received more than 30 blood transfusions. I was never ill because of that - I had the usual flu and colds. My boyfriend and I went hiking in August 1978 with a couple who had both turned 40. I was puffing and one of the couple was a doctor. He asked if I'd ever had my haemoglobin tested and I said no. When we got home, he arranged for a blood test.
He then referred me to Dr Peter Clarke at Toronto Western Hospital here in Toronto who did a battery of tests.
My boyfriend and I went to Mexico that Christmas. I had a small bout of Montezuma's Revenge. When we got home, my urine was dark brown and I was tired so I called Dr Clarke. It took him only 2 months after that to diagnose my pnh.
I've been self employed since 1980 and was able to do everything I wanted including travelling.
In 2005, the pnh caused me to have debilitating strokes and a heart attack. In January 2012, I started taking the drug eculizimab/ Soliris for the pnh. Since then I've had 12 blood transfusions but each one was because of nosebleeds (I take Coumadin because of the stroke and the membrane in my nose has become very thin as a result and hence the nosebleeds that don't stop.)
The most recent blood transfusion I received this past Christmas Eve (thank goodness there were so few people in Emergency!)
Every time I get a transfusion I am VERY thankful for the donors, the nurses' care, whoever discovered blood transfusions more than a century ago AND that I live here in Canada where I don't have to worry about money but can focus on my health. Oh by the way, I call the blood transfusions "medical adventures!
In the late 1980s I got to speak to a group all of whom had donated MANY times. I thought I was fine but when I looked out at them I realized that at that time about 30 people were responsible for my being alive. Standing in front of them I cried unashamedly and thanked them profusely for my life.
The picture is one of me speaking at a Toronto meeting of people with PNH in April 2015. I use a walker since the stroke in 2005 and it's behind me and just out of view.