“Keep calm and donate blood” – unknown author. Lately I have received a lot of questions regarding Hereditary Hemochromatosis. Since my platform is about spreading awareness about this disorder, I thought it would be a good idea to blog about it! So please enjoy this post about Hereditary Hemochromatosis and why I’ve chosen it as my platform. At the end, if you still have some unanswered questions please feel free to leave a comment! Let’s begin!
Hereditary Hemochromatosis is a genetic disorder where “there is excessive and potentially toxic accumulation of dietary iron in the body.”* You can only have the disorder if you have both of the chromosomes, or both genes. If you have only one chromosome, then you are a ‘carrier’ of the disorder. In this case, you will never have the disorder but you can possibly pass it along to your children.
“Hemochromatosis is Canada’s most common genetic disorder and is most prevalent in Canadians of European, Nordic and Celtic descent. One in 300 Canadians has the condition. Those with hemochromatosis are genetically unable to metabolize iron absorbed from their diet. Men and women are equally affected. Harmful iron overload occurs in joints, the liver, pancreas, heart, brain and endocrine glands. Left unrecognized and undiagnosed, the consequences of too much iron can be prolonged, severe and fatal.”*
“Hemochromatosis cannot be cured, however, early testing, diagnosis and treatment for the disorder can reduce or eliminate most of the severe complications, which include arthritis, diabetes, heart failure, cirrhosis of the liver and cancer. Diagnosis is made through blood tests and genetic testing. Treatment is simple: frequent and regular removal of blood. This blood is suitable for donation.”*
“The burden of undiagnosed hemochromatosis in Canada results in avoidable costs to the health care system of premature chronic diseases, the financial loss to families due to disability and the preventable loss of loved ones.”*
The Edmonton Chapter of the Canadian Hemochromatosis Society (CHS) invites you to attend its monthly meetings. Please see the “Events” section of the CHS website www.toomuchiron.ca for location and times.
Three generations of my family have been affected by Hereditary Hemochromatosis; myself, my mother, and my grandmother. My grandmother was the first to suffer from this disorder, however it took 10 years to finally be diagnosed. The reason I’ve chosen this as my platform is simple; I want to spread awareness so that future generations will not be subjected to years of frustration trying to find a proper diagnosis. It should not have taken 10 years for my grandmother to be diagnosed!
After my grandmother was diagnosed, her husband was tested for Hereditary Hemochromatosis. He was found to be a carrier which lead to their children’s tests. When my mother found out that she had the disorder she contacted the Canadian Hemochromatosis Society for information and support.
The society’s goal is the same as mine; to spread awareness. When I received my title as Miss Teenage Spruce Grove I was honoured to become a part of their team! Through volunteering and public speaking at events, I feel that I have been able to help educate people in my community about the disorder. I hope to continue my work with the Canadian Hemochromatosis Society in the future.
If you are interested in learning more about this disorder and how you can help you can visit either my Facebook page or the Canadian Hemochromatosis Society Facebook page at the following links:
Thank you for taking the time to read my blog and educating yourself about Hereditary Hemochromatosis. It is very important to me and to others that we spread awareness.
*Information courtesy of the Canadian Hemochromatosis Society.