Labrador woman calling for awareness 10 years after iron overload disorder diagnosis
Ten years after her diagnosis, a Labrador woman is continuing her battle with hemochromatosis. But Melita Paul is also hoping to inspire others to ask questions about the genetic disorder and advocate for themselves in the health-care system.
"I always say the only person who's really worried about me and my health is me," Paul said. "We need to just kind of take a check sometimes and see what's going on in our body."
From 2011 to 2012, the Charlottetown woman was struggling with major joint pain, fatigue and brain fog. Paul's bloodwork was being monitored at the local clinic, but it looked normal except for her iron, she said.
Paul said given the iron results, she asked her doctor about hemochromatosis.
"She was like, 'Oh no, no, you don't have that. That's genetic,'" Paul said.
No one in Paul's family was formally diagnosed at that time, she said. After consulting with a nurse, Paul reached out to the Canadian Hemochromatosis Society.
There, Paul learned about the disorder, in which iron-binding protein accumulates in peoples' bodies, including in joints, tissues and organs. The disorder can lead to liver damage, diabetes and skin discolouration.
The Canadian Hemochromatosis Society says it affects an estimated one in 300 Canadians and is prevalent in people with northern European ancestry, including Ireland and Scotland.
Paul decided to get a second opinion. The second doctor agreed with her suspicion, but couldn't formally diagnose her and referred her to a specialist. The specialist confirmed the diagnosis on the spot in 2013.
"The biggest part was just having somebody to listen and somebody to acknowledge that I was actually feeling the way I was feeling, and that there was some underlying reason causing this," Paul said.
There were no other diagnoses of hemochromatosis in southern Labrador at the time, Paul said, so that's why she believes it wasn't on the first doctor's radar. Paul was immediately able to get treatment through phlebotomies — where blood is removed from the body, similar to a donation.
Paul initially had to receive her phlebotomies in Forteau or Corner Brook, but advocated for the nurses in southern Labrador to be trained as well, and now receives them in her home community of Charlottetown, she said.
The family did genetic testing and her brother and both her children were diagnosed, she said.
She hopes her diagnosis may inspire others to talk to their doctors and look into the disorder.
"I'm just thankful that I was diagnosed when I was," Paul said. "You could be at risk. It could be you."
