Charity says 1 in 10 people in NI at risk of toxic iron overload
Recent research by patient charity Haemochromatosis UK has revealed that 1 in 10 people are at risk in Northern Ireland of genetic haemochromatosis. Most people have never heard of the condition but it appears to be the most common genetic condition locally.
If untreated the condition can lead to toxic iron overload, where the body is unable to process excess iron. The condition can cause liver disease, cancer, heart disease, chronic fatigue, diabetes, severe joint pain, sexual health issues, dementia and mental health issues.
This month, Haemochromatosis UK launched a privately funded multi-channel TV, press, billboard, radio and digital campaign to raise awareness of genetic haemochromatosis (iron overload).
Genesis Advertising created and funded the campaign with the support of a range of media and production partners. There was no funding from any government body - local or central.
Homebuilder Hagan Homes also provided additional support to fund subsidised genetic testing kits.
Billboards introducing the public to the condition are running across Northern Ireland and on local bus routes.
Market research undertaken earlier this year by Genesis revealed that 78% of people locally had not heard of the condition.
The charity’s Chief Executive, Neil McClements said: “Early diagnosis saves lives –and every diagnosis starts with public awareness. This campaign is bringing people together to raise awareness of the symptoms of this common, but treatable, genetic condition.”
Treatment is simple and effective – a form of regular blood donation. The blood can be donated via Northern Ireland Blood Transfusion Service (NIBTS) and used to help people suffering from other conditions.
Moira-based Sean McKegney, 56, was diagnosed by chance in Spring 2022 when he saw his GP about another health issue : “I mentioned to my GP that I had been having more and more aches and pains that could not all be attributed to old football injuries.
"He suggested a general blood test which showed that my iron levels which were over ten-times higher than normal, at which point he suggested it might be genetic haemochromatosis, something I'd never heard of up to that point.”
He welcomes the charity’s awareness campaign and screening programme : “Genetic haemochromatosis was completely unknown to me or my family so I asked them to get checked out just in case but so far so good, no one else seems to have it.
''I'm at the start of my journey still awaiting some routine checks for my liver but so far the experience has been more an inconvenience, venesections every other week, rather thanany real issue and am still learning about it.”
The awareness campaign is being supported by a postal home-based screening programme across Northern Ireland, delivered by Haemochromatosis UK. NI residents can order a subsidised health check kit online before 30th November by visiting https://www.haemochromatosis.org.uk/get-tested-for-genetic-haemochromatosis.
A home testing kit is then delivered and returned by post. Once the kit is returned, within 2 weeks, the charity will write with results to everyone tested and their NHS GP, withinformation about their personalised test results and what to do next.
For more information about genetic haemochromatosis, or support following a diagnosis, visit www.ironoverload.org.uk.
In a statement the Department of Health said there is information on NI Direct.
https://www.nidirect.gov.uk/ conditions/haemochromatosis
The spokesperson added you should also see your GP if you have:
persistent or worrying symptoms that could be caused by haemochromatosis – particularly if you have a northern European family background
a parent or sibling with haemochromatosis, even if you don't have symptoms yourself – tests can be done to check if you're at risk of developing problems
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