My daughter and I could not believe that someone so healthy and full of life could pass from this world due to high iron levels.

In January 2010, my usually healthy, energetic 72 year old husband began to feel unwell; unable to describe the feeling except to say that he felt very tired. Regardless of this fatigue, he continued to play tennis three times a week and worked a few hours at a small local store. Sometimes the work was strenuous, but my husband enjoyed meeting people and he wasn’t a man to give up easily.

During several physicals, his doctor had noted a rise in ferritin levels. The doctor said there was no cause for alarm as he had seen much higher ferritin levels in other patients. There was no mention of iron overload; my husband and I assumed all was well.

By summer, the ferritin levels had risen to 935 ng/mL. The doctor thought it may be iron overload and ordered more blood tests, but there was still no definitive diagnosis.  During the next two years, without diagnosis or treatment, my husband began to show definite signs of what I now know to be hereditary hemochromatosis. He developed a bronze skin tone, and his friends would ask if he had been down south. He was constantly tired and lost his appetite. His ferritin was now 1,793 ng/mL.

Finally in 2012, my husband was referred to a hematologist and a gastroenterologist. An MRI disclosed severe liver damage. Phlebotomies were ordered and iron levels decreased, but so did the white cell count.  Following several inconclusive bone marrow tests, my husband was unable to continue with phlebotomy therapy due to his low white cell count. The only available treatment for him now was a chelation medication, but his damaged liver was unable to filter this strong medication. His ferritin levels rose and he began to suffer with many of the associated illnesses of hemochromatosis.

On Friday, April 19th 2013 I called the ambulance to take my husband to hospital. He died on May 3rd from complications of hemochromatosis due to an untimely diagnosis.

One important point to note is that at no time during my husband’s consultation with doctors was there any mention that his family, siblings or children should be tested for this hereditary condition.

My daughter and I could not believe that someone so healthy and full of life could pass from this world due to high iron levels. We researched the condition and discovered the Canadian Hemochromatosis Society (CHS). We also learned that ours was not the only case of a late diagnosis ending so tragically. We attended an information session in Montreal, and soon after, we formed the new Ottawa Chapter for CHS. Our first information session drew a small amount of attendees, but we found volunteers who were willing to help build the chapter.

Since those early days of starting up the new chapter, we have had several successful information sessions. We attend the Highland Games to help bring information to the Celtic population who are often affected by hereditary hemochromatosis. The chapter has organized four fundraiser golf tournaments and we attend health shows in the area, bringing awareness and information. The cure for hemochromatosis is awareness.

In our small group of 8 volunteers, we have among us two who have hereditary hemochromatosis, my daughter and one of her friends are carriers of one of the mutations, and the father-in-law of one of our volunteers has just been diagnosed with the disorder.  It is easy to believe that 1 in 300 Canadians is at risk of this genetic condition!

You too can help strengthen awareness of hemochromatosis by joining our membership at www.toomuchiron.ca/membership