Haemochromatosis UK’s screening programmes for haemochromatosis, a genetic condition that causes iron to build to toxic levels in the blood, have helped thousands across the UK. By providing postal health check kits, the charity has helped thousands secure earlier diagnoses, preventing the lifelong and potentially fatal implications of the condition.

Aberdeenshire resident, Miranda McHardy, 59, died from complications of haemochromatosis that were preventable. In her memory, Haemochromatosis UK launched a preventative health initiative, providing over 25,000 households with free testing kits. Through a simple finger-prick test, Haemochromatosis UK screened for the genetic disorder that can cause arthritis and liver cancer, among other conditions. The charity returns results within two weeks, offering a free 45-minute consultation with a specialist nurse and a written report to your GP about next steps.

Miranda (59) died from haemochromatosis (iron overload) complications that could have been prevented with an earlier diagnosis. Miranda is missed by her family and friends, who feel the injustice of her death.

Miranda’s sister, Louisa, says, ‘if Miranda had known what she had she would still be here now. She had chronic arthritis, type one diabetes, heart and liver damage, all of which was completely preventable.’

Louisa supports Haemochromatosis UK’s screening programme, stating ‘this is why screening is absolutely crucial, early diagnosis will literally save lives and the NHS thousands of pounds treating the chronic conditions which result from iron overload.’

Haemochromatosis is the most common undiagnosed genetic condition in Scotland. Research suggests that 1 in 113 people in Scotland are pre-disposed to the condition, but fewer than 1 in 20 have been diagnosed.

Haemochromatosis UK also launched a screening campaign across Derry-Londonderry in 2021, which accompanied their research findings that 1 in 10 people in Northern Ireland are at risk of haemochromatosis. By requesting home testing kits, residents could test for haemochromatosis for free, the first time this had been achieved in the city.

Julia and her family were diagnosed after receiving a leaflet about one of Haemochromatosis UK’s screening campaigns through the door.

“I knew about haemochromatosis after a relative had passed away from, what we were told was leukaemia. We later found out through genetic history research that it was haemochromatosis,” Julia says.

“My nephew got tested and didn’t have haemochromatosis, but he had an extremely low blood count. An endoscopy showed that he had a bleeding pre-cancerous polyp, something he never would have had tested if it wasn’t for knowing about haemochromatosis,” Julia recounts.

Through venesections, Julia’s brothers have been able to drastically reduce their iron levels, avoiding ill health later in life.

Haemochromatosis UK’s specialist nurse who operates the charity’s helpline says, “We see people being refused a genetic test by their GP even though they have a family member with it… We talk to people to empower them to go back to their GP and ask the right questions.

“Sometimes people are given a blood test only, not a genetic test, so they are confused about what to do.”

Tony Richardson (58) was diagnosed with haemochromatosis through Haemochromatosis UK’s postal testing service, following medical delays and neglect.

Tony Richardson, 58, who received a positive haemochromatosis test through the charity, commends the efficacy of the process, “I posted the test on a Tuesday, got results on Friday, and a Zoom consultation on the following Wednesday.

“I was told I was fine, but I felt like I was dying,” Tony reports, feeling neglected due to year-long referral times, and dismissal of his symptoms.

“[Haemochromatosis UK] assigned me a ‘buddy’ during treatment. Without them I don’t know where I would be… my son had tried to get a test and the NHS told him he didn’t need one.”

Haemochromatosis UK’s widespread screening programmes and the convenience of its postal testing kits has helped thousands be diagnosed earlier with haemochromatosis. A safe and easy service, the postal health check helps to identify and advise upon a manageable but poorly understood condition, which without an early diagnosis can lead to serious health issues and death.

If you are concerned about genetic haemochromatosis, the charity Haemochromatosis UK has a telephone helpline open on weekdays Noon-3pm. Call 03030 401 102 or email helpline@ironoverload.org.uk.

The charity operates a postal testing service with results available within two weeks. For further details, visit www.IronOverload.org.uk

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