Newfoundland Coordinator Spreads the Word

Posted July 28th, 2010 by webadmin

Guest Blog By Linda Oldford

I first heard of hemochromatosis in the late 1980s when I watched a CBC program on which Marie Warder was discussing the disorder and her book, The Bronze Killer. I remember writing down the details and being intrigued that such a potentially fatal disease could go undiagnosed. When my brother was diagnosed in 1994, I immediately recalled the television program and the hemochromatosis society that Marie had started.

In 1995, the Readers Digest printed an article about hemochromatosis. I encouraged family members to read it and promote testing in order to find out from which side of the family we had inherited hemochromatosis. I suspected my father’s side because three of his brothers had died in their 60s from stomach or liver disease. As well, that side of the family had cases of early diabetes and arthritis. My suspicions were confirmed when my father’s sister’s son (my cousin) was diagnosed next. I come from an immediate family of 14 and now five of us have been diagnosed since my brother’s initial diagnosis. Now more than 100 extended family members have been tested. For me, that confirms why awareness is so important.

At first, I thought it was unlikely that I would have it as I was having blood tests and check-ups every couple of months after treatment for breast cancer. I have had arthritis for years and now I was also feeling chronically fatigued, had irritable bowel, mood swings, and my hormones were abnormal, all of which I blamed on the chemotherapy and radiation treatment. But I was wrong. Instead, these were all symptoms of hemochromatosis. I had genetic testing done in 2003 which discovered the common C282Y mutations on the HFE gene. My ferritin level was 586 ng/ml, and following investigations and a visit to a hematologist, I began phlebotomies to bring my ferritin down to 50 ng/ml. I am now maintained on phlebotomies 3-4 times a year through the hospital system as I am unable to donate at CBS clinics because I had breast cancer. My four children have been tested and do not have hemochromatosis.

In 2004, one of my brothers, who initially did not have the genetic testing, started experiencing severe arthritis. He remembered the family history and symptoms of hemochromatosis and so he had his iron levels checked. His ferritin level was measured at 3100 ng/ml and obviously started phlebotomies right away. He thankfully is now down to a healthier level of 50 ng/ml.

With the family looked after, I set about to inform whomever I could about this disease. I felt that everyone needed to know about hemochromatosis and get tested because if diagnosed early, simple treatment via phlebotomies could prevent the secondary damage.

I joined the CHS and received all the educational literature. I started my awareness campaign at the local hospital where I worked as a nurse. I found few staff who knew what hemochromatosis was, so I developed an information package for all the medical staff. It was well received. Last year, we had a display table in the hospital lobby to hand out brochures.

I talked about hemochromatosis at my check-up at the cancer clinic, and on my next visit, the doctor told me, because of what I had told him, a colleague of his got tested and was diagnosed.

I then moved on to the community putting up posters during hemochromatosis awareness month in May and leaving brochures in clinics, doctors’ offices, malls, and anywhere else that I could think of! Now I am happy to report that our local radio station plays the hemochromatosis public service announcement during May awareness month, the local newspaper has printed the article Hemochromatosis Should Be A Household Word and our provincial newspaper interviewed me and published an article on hemochromatosis. Two years ago, I joined an on-line book club “Bookcrossing” and use as my home page. I get several messages a year from people all over the world who check it out and thank me for providing hemochromatosis awareness.

With my role as CHS regional coordinator for Newfoundland, I hope to continue to spread awareness whenever and wherever I can.