The Colour of Hemochromatosis is Blood

Posted April 14th, 2014 by webadmin

by Bob Rogers, CEO and Executive Director of the Canadian Hemochromatosis Society

What if every Canadian knew that the majority of BLOOD in Canada’s blood system came from those affected by hereditary hemochromatosis (HHC)? What a change it would make! Do you realize that if 25% of those at risk for HHC registered and donated at least two units of blood with the Canadian Hemochromatosis Society’s Partners for Life group, over 50,000 units of blood would be made available to help hospital patients? Can you imagine the level of awareness in Canada about hereditary hemochromatosis that would be created? The Canadian Blood Services would likely want to find more people with HHC. The same case can be made regarding blood donations with Héma-Québec. No longer would we need to fight to tell people this IS NOT a blood disease. No longer would there be the devastating ignorance about this disorder amongst healthcare professionals and the general public. Early testing, diagnosis and treatment would be commonplace and people would live healthy vibrant lives with their families in their communities. Throughout Canada and very likely around the world, hereditary hemochromatosis would be well known and the fight to promote awareness would be won

Several years ago I was standing curbside watching a Canada Day parade make its way through town. Far away in the distance I saw a huge throng of women all attired in PINK t-shirts. Without a moment’s hesitation I knew at a glance the cause these marchers represented. PINK ribbons, t-shirts and insignias are everywhere. The breast cancer movement has built a strong association with the colour PINK. Through the colour PINK they have helped countless women learn to fight and overcome the ravages of breast cancer. They chose their colour and took the steps to promote it everywhere.

Therapeutic phlebotomy or blood-letting is the classic treatment for HHC and most everyone with the disorder needs to have 500cc of BLOOD withdrawn approximately every 3 to 4 months. Further, since no one wants to see BLOOD wasted, those affected by HHC can donate this BLOOD to the Canadian Blood Services (Héma-Québec in Quebec). The Canadian Hemochromatosis Society is a national participant in the Partners for Life program. When a person donates blood to Canadian Blood Services, the donor may register their BLOOD donation towards the Canadian Hemochromatosis Society’s Partners for Life group. Remember, if 25% of those at risk for HHC registered and made two blood donations per year with our Partners for Life group, Canadian Blood Services would collect over 50,000 blood donations from these members alone. This would significantly supply the blood needed in Canada. Yet, in 2013, only 198 units of donated blood were registered in our Partners for Life group. While we are grateful for the 198 donations, it isn’t enough to be an important marker for HHC. We believe many more people with HHC give blood to Canadian Blood Services, but the donation isn’t being registered. Can we change this please?

I want to challenge every reader and their family members to give blood to Canadian Blood Services and register their donation with the Canadian Hemochromatosis Society’s Partners for Life group. All you need to do is check your eligibility, call 1 888 2 DONATE to book your appointment, then register yourself at www.blood.ca/joinpartnersforlife and use ID number CANA002257 (four letters, six numbers). Register once and all donations made at any Canadian Blood Services clinic will be tracked toward the hemochromatosis group. Any donations already made in 2014 will be counted retroactively to January 1, 2014.

Please do your part to create a very visible awareness marker for hereditary hemochromatosis. Let BLOOD be our colour to move awareness ahead and save lives.