Letter from Ireland

Posted September 25th, 2017 by Canadian Hemochromatosis Society

The following is a letter sent to us from Dermot, while vacationing in Vancouver from Dublin, Ireland. Dermot wrote to us in response to Jeanie’s story which was published in the September 2017 issue of Celtic Connection.

I found a copy of the Celtic Connection paper and found it amazing that this paper contained so much information and a link to an app for managing Hemochromatosis.

I have the gene for Hemochromatosis and would like to share my story in the hope that it helps others.

I was born and still live in Dublin. My father was diagnosed with the gene at 56 years of age and his ferritin level was 350 ng/mL. As a family we sought diagnosis. My mother had died of cancer two years previous (Hemochromatosis may have been an underlying cause).

Our health care system is not on par with Canadian health care. I visited my GP (who was aware of my dad’s Hemochromatosis) and she sent me for a ferritin test 3 times over 18 months, before sending me for a genealogy test (it costs more than a ferritin test).

By the time I was diagnosed I was already taken into hospital for mild depression. My ferritin level was 1033 ng/mL (at age 35). I received two phlebotomies a week at start, then reduced to one per week. When I look back on my health before diagnosis, at age 15 I was suffering from joint pain, along with other symptoms of Hemochromatosis. All of this was information available to my GP.

As so many Irish immigrants are now living in Canada and 1 in 80 have the gene, my advice is not to wait, make your GP send you for the genealogy test. I have stiffness in fingers and ankles, high blood pressure, mild depression but I still feel lucky as I have been treated for the last 5 years.

As you know, this gene can be fatal and not enough is being done to make people aware. It scares me so much that I still meet doctors and nurses in the Irish health system who are unaware what Hemochromatosis is, or who’ve heard of it but not sure of what it really is.

Thanks for the app, I will try it out and let you know how it goes.