Calgary Hemochromatosis Advocate Takes Her News to the Games

Posted August 25th, 2010 by webadmin

Guest Blog by Anne Stang

“Hemo what?” I suspect I am not the only person who has had that reaction on being told about hemochromatosis. Fortunately for me, I was diagnosed from a routine blood test by my GP in February 2005. Hearing that my serum ferritin level was 458 ng/ml and that I had two copies of the C282Y mutation in the HFE gene didn’t mean much back then.

My first stop on the way home that day was to get the Iron Disorders Institute’s book on hemochromatosis to educate myself. Since my diagnosis came as a result of a routine test, I was only aware of symptoms in retrospect. I was stiff at times, and tired, but I attributed that to my age (now 66). I also had mood swings, but they were not that frequent and I don’t think they were noticeable by others.

I had ten phlebotomies (I call them my “leech” sessions) in twelve weeks in the spring of 2005 to bring my ferritin level back to normal. I have had three phlebotomies since, as part of maintenance, and have regular blood tests to follow my ferritin levels. Typical blood donations through Canadian Blood Services are unfortunately not an option for me because I had rheumatic fever at age ten, and have travelled to malaria exposed countries.

I have also modified my diet at home. I choose not to eat red meat and I got rid of iron-rich products like Bran Flakes and Cheerios. It remains to be seen what the long-term effects of my phlebotomies and diet changes will be.

The doctor does not think I have sustained any tissue damage. I still get stiff of course, but my energy level has been much higher for almost a year and the mood swings are gone. Some visible weight loss was a welcome side-effect!

Overall though, the hemochromatosis diagnosis has not changed my life much except to make me even busier. I am a retired teacher librarian and I occupy my time with reading, gardening, sewing, cooking (even with tofu), cycling, cross-country skiing, travelling, going to operas and other concerts, singing, and volunteering.

I have a large family with eight living siblings, and my doctor suggested to me that I inform them about hemochromatosis. They have all had their ferritin checked now, and several have had the genetic test. One older sister also has hemochromatosis and two sisters are confirmed carriers. I suspect another sister and an older brother are also carriers, and the other three are unaffected.

My sister with hemochromatosis has had monthly phlebotomies, and one of her daughters has also had several as she inherited the H63D gene variation from her father. My sister, who is a carrier, has had four phlebotomies and is awaiting another appointment with a hematologist to see if she needs more. The suspected carriers in the family are either on the wait-list for genetic counselling or are contemplating the referral.

Because my parents were both from very large families, and two of mom’s sisters married two of dad’s brothers, I felt that it was extremely important to reach further than my sibling branch of the family tree, and inform as many relatives as possible. I talked a lot at family gatherings and sent some letters and emails. The first news of an affected relative came from the daughter of a “double” cousin. She was diagnosed at 22. Since then, I have found out that her mother (my cousin’s wife) and brother also have hemochromatosis. So the hemochromatosis family history is growing. We all now use the Canadian Hemochromatosis Society website and have become society members.

My advocacy about hemochromatosis has included talks to my ethnic group and to a senior’s group, as well as several short articles in my ethnic and community newsletters. My ethnic group is called the Germans from Russia (GRs). They are the Germans who migrated to Russia between the 1760s and 1840s, and then to the Americas from about 1870 to 1930. They lived in their own communities in Russia, and often did that as well for the first years in Canada, the United States and South America. Consequently, there were not a lot of marriages outside of the community for as much as two hundred years. The GR population eventually numbered well over 1 million, and given the history, I wonder if the incidence of hemochromatosis is higher among the GRs than in the general Caucasian population.

It was this speculation that prompted me to visit Macklin, Saskatchewan, where many of my relatives live, for the annual Bunnock Tournament. Bunnock is a game that was brought to Canada by the GR ancestors. I knew the tournament brought many visitors to the area, so I arranged to have a table at their fair to explain hemochromatosis and to distribute brochures. Because I am related to many families in the area, I received more than a polite reception and many promised to talk to their doctors. I hope the doctors in the area will be inundated with some of the 400 brochures I handed out!

I have met very few people in Calgary with hemochromatosis, but I am hearing more informed responses when I tell people about my condition. Just this week, my massage therapist told me that one of his clients complained about her diabetes and other symptoms. He remembered our conversations and gave her one of the brochures I had left there. A week later, she called the therapist to say she had been diagnosed with hemochromatosis. A little effort from all of us to spread the word can make a difference for so many others.