Iron Chronicles

Hemochromatosis Stories

CHS brings awareness and support to thousands of Canadians every year through our programs such as Community Outreach and Client Support. The stories below chronicle the ways that CHS helped these individuals as they faced the adversities that hemochromatosis can bring.

Daron

“I felt I was in the best shape of my life having completed seven marathons and my first 50-kilometer Ultra Marathon.” But Daron couldn’t run from hemochromatosis.”

Deborah


“I was unexpectedly diagnosed with hereditary hemochromatosis in 2009 while in my mid-40s during treatment for another medical issue.”

Karine


“The energetic woman, always ready with a lot of projects in mind, spent her spare time sleeping.”

Marlene


“At this point in my complicated health journey, my suggestion for you is to know your lab result numbers. Use the Canadian Hemochromatosis Society as a resource for information.”

Carimé


“Whenever I tell someone familiar with hereditary hemochromatosis about my diagnosis, they’re always surprised because I was diagnosed at such an early age: 19”

Bruce


“I would get the occasional person asking me if I had recently been away on vacation to a sunny place, as they thought that I had a nice tan…”

Greg


“Hopefully one day my early age of diagnosis becomes the standard rather than the exception to the norm.”

Drew


“Hemochromatosis is a hidden disease which is so common, yet many people have not even heard of it.”

Jackie


“My daughter and I could not believe that someone so healthy and full of life could pass from this world due to high iron levels.”

Ceci


“I began to experience severe exhaustion and a host of other symptoms that no one could explain.”

Darryl


“There was confusion with my doctors whether a compound heterozygote had hemochromatosis”

Colette


“It is clear to me that not all people with Hereditary Hemochromatosis manifest it in the same way.”

Owen


“I’ve got Celtic blood in me – one of the risk factors for hereditary hemochromatosis.”

Rick


“I’m one of the lucky ones; I now get to spend time with my two beautiful grandchildren and loving family.”

Melita


“Receiving a diagnosis was almost rewarding in a way; it meant that there was really something medically wrong within my body.”

Patrick


“My experience with hereditary hemochromatosis began the month before my 33rd birthday.”

Rayne


“I believe you have to be an advocate for yourself.”

Jeanie


“I think there needs to be more awareness for doctors to test for hemochromatosis.”

Ross


“At the age of 47 I immediately recognized the symptoms in myself.”

Johanna


“This is not curable but it is treatable, especially if caught early.”

Jo-Anne


“As months progressed, symptoms worsened inhibiting my quality of life.”

Christopher


“If your doctor is stumped and they can’t figure out what your health issue is, get a Ferritin test.”

Samantha


“My sister and I are the ‘1 in 300 Canadians’ who have this genetic condition.”

William


“I was tired all the time, my joints were stiff, my stomach felt bloated, and my eyes tired easily.”