Don’t let the Celtic Curse be your Christmas surprise
Posted December 17th, 2017 by Canadian Hemochromatosis Society
By Ian Hilley
My Mum survived the Blitz during the Second World War; her parents were from Manchester and Wiltshire. My Dad was from Clydeside in Glasgow, Scotland and was a regular blood donor in the United Kingdom, being honoured with a gold pin to recognize over 50 donations. Who knew that they would produce a child with haemochromatosis, or as we say here in Canada, “hemochromatosis”? No one! At least not until some 50 years after my birth.
I count myself lucky. I found out that I had hemochromatosis after a routine annual medical available to anyone in Ontario. I saw a different physician than my regular family physician. In addition, to the regular blood tests he performed a ferritin test. In a subsequent visit I received the feedback that my ferritin was high (about 700 ng/mL versus the typical range of 25 – 300 ng/mL for a male). Having shared my family history, a Cockney with Glaswegian roots, I was sent to a hematologist to investigate the possibility of hemochromatosis. Hemo what? Too much iron. What? Why? How?
I had the good fortune to discover I had the disorder. After de-ironing, involving biweekly trips to see the hematologist, I learned that I could manage the disorder through regular blood testing for ferritin and occasional blood donations. The surprisingly simple treatment – giving blood on a regular basis – is effective in managing the condition for most people and more often than not the blood can be donated to the Canadian Blood Services.
Two-thirds of the 125,000 Canadians who are born with the genes for hemochromatosis will develop iron overload, aka the Celtic Curse, and thus are at risk of severely debilitating or even fatal health impacts
This disorder is most frequently seen in Canadians whose families have come from Northern Europe, in particular, France, Ireland and the UK. The disorder affects 1 in 83 Irish people.
Hereditary hemochromatosis, or iron overload, is an inherited disorder that causes the body to absorb two to three times the normal amount of iron. Over the years, the excess iron builds up in the vital organs, joints and tissues where it can cause a number of debilitating and potentially fatal conditions such as liver and heart disease, diabetes, impotence and arthritis. The treatment involves simply taking blood on a regular basis, which helps the body to reduce its iron to normal levels.
I shared my diagnosis with my Mum, Dad, sister, spouse and daughters. My sister does not have hemochromatosis but she could be a carrier. My daughters are not experiencing any symptoms of hemochromatosis but they are young women and will have the genetic test. My Mum, who sadly passed away this year, was unhappy that she had shared this genetic gift with me.
I monitor my condition with a made in Canada, free to download app, “Iron Tracker” developed by Professors Gary Grewal and Andrew Hamilton Wright of the University of Guelph. The app has been downloaded more than 3,500 times and has been in use in 38 countries around the world since the fall of 2014.
I have just retired as president of the Canadian Hemochromatosis Society.
Of the approximately 80,000 Canadians who load iron, most of them are unaware. Until recently, medical professionals were taught this was a rare disorder, so some doctors may not be fully alert to the symptoms and risks.
“It is very important to think of hemochromatosis early because the later effects are not reversible and can result in severe illness,” said Dr. Sam Krikler, Regional Department Head of Laboratory Medicine and Pathology for the Fraser Health Authority, British Columbia.
It is the time for giving. So if you have hemochromatosis and want to help the Canadian Hemochromatosis Society help those who are newly diagnosed or are investigating a diagnosis for their symptoms, please make a donation at www.toomuchiron.ca
If you know someone who might have hemochromatosis or want information on Canada’s most common genetic disorder please go to www.toomuchiron.ca or phone 1-877-223-4766.
Many of us will be looking forward to the surprises that will await under the Christmas tree. Make sure that you know that you have hereditary hemochromatosis – don’t let this diagnosis be a surprise and be too late to make a difference.