Deborah

Paying it forward

Deborah (centre) raising awareness of hemochromatosis at her local Co-op

I was unexpectedly diagnosed with hereditary hemochromatosis in 2009 while in my mid-40s during treatment for another medical issue. I was told that my iron levels were exceedingly high (over 1300) and that they were going to have me genetically tested for another “rare” condition – one that I’ve since discovered is not so rare. While I am the first in my extended family to be diagnosed with hemochromatosis, I have Scandinavian/English ancestry which is a classic background for this genetic condition. I am homozygous C282Y and went through an aggressive de-ironing regimen of weekly to bi-weekly to monthly phlebotomies until my iron levels tanked to below 10 for a few years and I learned about iron avidity thanks to the Canadian Hemochromatosis Society. While I don’t seem to load iron quickly, my blood levels are monitored and I have needed a few phlebotomies over the past 6 or so years.

The Canadian Hemochromatosis Society held an Information Session in Edmonton a few years after my diagnosis and I learned a lot more about hereditary hemochromatosis. It left me with a true sense of gratitude that my diagnosis was made before I suffered development of secondary chronic conditions and the real deterioration of quality of life described by some of the Session’s attendees who had gone through decades of various illnesses before being diagnosed in their 70s and 80s. I look at my hemochromatosis diagnosis as the silver lining of that difficult time. By keeping my iron levels in a healthy range, I won’t suffer the health issues that can develop with excessive iron loading.

This is why I became involved with and support the Canadian Hemochromatosis Society. I know the value of making people aware of this silent killer and want to help spread awareness. To top it off, the Canadian Hemochromatosis Society’s involvement in the Partners for Life program with Canadian Blood Services presents a fantastic opportunity to spread awareness while supporting both organizations’ work to save lives.