The Canadian Hemochromatosis Society, a registered non-profit charitable society from Richmond, B.C., is celebrating its 40th anniversary. To celebrate their four-decade commemoration, the organization’s program's lead Liz Charyna, started driving across Canada in "Elsie The Bus" on May 1 to raise awareness about Hemochromatosis.
Hemochromatosis is a disorder in which the body can build up too much iron in the skin, heart, liver, pancreas, pituitary gland, and joints.
Earlier this week, Charyna drove through Halifax for the first time in her noticeable ride, which was named after her mother Elsie.
Charyna had transformed the bus into an adventure vehicle by stripping the bus’ interior, removing ceiling panels and windows, adding a stovetop, installing cabinets as well as a bed and office space.
The decorated bus inside and out was designed to bring Charyna and hemochromatosis awareness all across Canada. The whole process of reconstructing Elsie The Bus can be found on their website.
“It's our 40th anniversary so we wanted to do something really special. I am the manager of people and programs and so what better way than to drive across Canada, to meet our people, to increase our members, to increase our local chapters, and really spread awareness about hereditary hemochromatosis.”
Elsie The Bus was designed to bring Charyna and hemochromatosis awareness all across Canada. The whole process of reconstructing Elsie The Bus can be found on their website. Photo by Sara Gouda.
Individuals with hemochromatosis are born with a gene that malfunctions and keeps attracting iron that gets stored in the body. Having too much iron stored in the body and in vital organs can lead to arthritis, diabetes, cirrhosis of the liver and heart problems.
Hemochromatosis is the most common genetic disorder in the western world, affecting an estimated 1 in 300 Canadians, primarily of Northern European descent.
The signs and symptoms of hemochromatosis vary from one individual to the other. Symptoms include fatigue, joint pain, stomach pain, hair loss, loss of libido, depression and more.
“There are lots of different signs, for this one gentleman, he was just losing a bunch of hair and when he started doing the phlebotomy that stopped.”
The best treatment for hemochromatosis is phlebotomy: a procedure to remove a specific amount of blood from a vein in your arm, or by donating blood.
“We've been spreading awareness for 40 years, but still not everybody knows. We're a small non-profit based out of Richmond, BC. and Canada is a big country.”
Charyna said she is enjoying Halifax before her next stop on Prince Edward Island.
The Canadian Hemochromatosis Society is financially supported through fundraising activities, donations and provincial government grants.
People interested in helping have the option of donating $10 through the society’s text campaign, by texting the word "iron" to 45678. Their website also includes a lot of information on hemochromatosis from resources, support systems, as well as doctors and health care providers.
Listen to the full interview below: