Whanganui man raising awareness of ‘silent killer’ haemochromatosis

Daniel Harding wants to raise awareness of haemochromatosis. Photo / Bevan Conley

Involuntary skin bronzing or “greying”, fatigue, headaches and consistent illnesses are just some of the symptoms consistent with haemochromatosis.

It is a currently incurable disorder in which the body can build up too much iron in the skin, heart, liver, pancreas, pituitary gland and joints. Too much iron is toxic.

World Haemochromatosis Week starts on Thursday, June 1, and Whanganui public sector worker Daniel (DC) Harding is keen to raise awareness of the disorder.

Haemochromatosis is a hereditary disorder with a mutated gene handed down from parents passing it on to the next generation.

“As a young boy I would notice discolouration around the joints in my hands and would always try to scrub it off, not knowing what it is,” Harding said.

“One in seven people are carriers and one in 200 people inherit the disorder.”

There were three types of haemochromatosis genes, one of which, the C28Y gene, he inherited.

“Fast track to my mid-20s and I was so low in energy most days that I would skip course and stay home.”

Harding was 24 when he was diagnosed with the disorder and he then struggled for two years for approval of venesection (blood-drawing) treatment.

“Eventually I was approved and I started having venesections at 26. At the time I started treatment my haematologist at the time used blood donation bags but now technology has advanced to vacuum pumps that are inserted into my arms,” Harding said.

“I lose about 10 per cent of blood at each venesection which helps maintain a balanced amount of blood and iron in my system.”

The disorder can cause organ failure by toxins released by iron that has pooled around organs for too long, leading to death. High haemoglobin is another result of haemochromatosis.

Harding said it was important for the body to rid itself of excess iron but with hemochromatosis, there was no output for the iron.

“Venesection is the only way to stay on top of the build-up of toxic iron. The good news is that the body tells you when it’s time to see the haematologist by the bronzing of the skin or fatigue.”

Haemochromatosis management is reliant on a strict diet.

Those suffering from the disorder have to monitor their diet, as most food contains amounts of iron.

“I can’t eat too much beef, pork or fish or offal. I even have to watch the greens I eat as well. Salmon, for example, is high in salt and iron,” Harding said.

Most people would not know they had the disorder which could be hard to identify as people did not know the symptoms, and fatigue or low energy were often thought to relate to other medical issues, he said.

Support groups for haemochromatosis are scarce in New Zealand which Harding is trying to fix through his social and physical networks.

“Because haemochromatosis falls under blood-related issues, groups like Leukaemia & Blood Cancer NZ oversee overall health issues in the ‘haematology’ space.

“And whilst we must acknowledge our whānau suffering from other blood-related health issues, more needs to be done for haemochromatosis patients.”

Harding said the centralising of the health system was a big help as he was able to visit any haematologist around the country to receive venesections and still be enrolled under Te Whatu Ora Whanganui.

“My haematologist travels from Palmerston North to Whanganui to make things easy for me.”