“I believe you have to be an advocate for yourself and you need to find a physician who is open to partnering with you in your care.”
For me, knowledge is power, so when I received my hemochromatosis diagnosis I immediately hit the internet. By far the most valuable resource I found was the Canadian Hemochromatosis Society’s (CHS) website toomuchiron.ca . I believe you have to be an advocate for yourself and you need to find a physician who is open to partnering with you in your care.
I was 40 years-old and complaining of exhaustion at my annual check-up when my doctor decided to test me for anemia. It turned out my iron levels were not low, they were actually high. More tests were ordered to confirm it was hemochromatosis before I was referred to a specialist at the University of Alberta (U of A) Hospital to start phlebotomy treatments.
I started my treatments with a ferritin of 469 and saturation levels of 99%. Fortunately, I was already a regular blood donor so I was unknowingly treating myself – my ferritin was lower than it could it have been.
After a series of phlebotomies I was able to get my ferritin level down to 50 where I now try to maintain it through regular blood donations. The only glitch comes when I travel to countries such as India where I am removed from the donor list for a year. In those cases, I go back to my doctor with a request to resume phlebotomy treatments at the U of A Hospital.
Once my treatment was underway, I decided to volunteer for the CHS. The highlight of that experience was meeting the late Marie Warder, the organization’s founder. What an inspiration. Talk about learning advocacy from one of the best. Without her, CHS would not exist. The message that stuck with me was the importance of being in tune with your body and challenging conventional care guidelines if it doesn’t feel right for you. It is a balance that starts with being well informed and working in partnership with your doctor.
Thanks in part to CHS I am in control of my hemochromatosis. Whenever I meet someone with the condition (often when I am donating blood) I pass along the CHS website if they aren’t aware of the organization. I am surprised how many people with the condition aren’t aware of such a rich resource.