Spalding based Charity launching new programme to support people at risk of an iron overload
It's been made possible by new funding
A new 5 year programme supporting people at risk of an iron overload will soon be launched by a Spalding based charity.
Haemochromatosis is the UK's most common undiagnosed genetic condition and it affects the body's processing of iron which can lead to cancer, and heart disease.
The programme's been made possible by recent funding.
Neil McClements is the Chief Executive of the charity and tells us more:
"Haemochromatosis is a genetic condition, and those people who are affected by it have difficulty in regulating the iron in their body. Too much iron, and our bodies is extremely toxic and it can lead to other ill health, including things like liver cancer, diabetes, heart disease and also mental health issues.
"On a day-to-day basis, people with Haemochromatosis often experience a range of symptoms - many people will experience chronic fatigue and also joint problems, particularly in the first two fingers, on either hand or in the ankles.
"For people who've actually experienced on overload for an extended period of time, sometimes they can experience tenderness or soreness in their stomach area, particularly on the right hand side. Which is where the liver is located, and we know from recent research, that people with Haemochromatosis have a much higher risk of mental health issues, including things like anxiety and depression."
He added, that this funding means a lot to the organisation:
"We're really thrilled to receive this funding from the National Lottery. It's a massive step forward for a very small organization. We've been given funding for five years to work with families and communities at risk of Haemochromatosis across England.
"It'll enable us to do more work in terms of raising public awareness of the condition, helping families affected or at risk of the condition to get the support and care that they need... whilst also helping clinicians and our hardworking NHS colleagues to be better informed about the symptoms and how to go about diagnosing this relatively common condition."
The Spalding-based charity has been awarded a total of £393,500 in National Lottery funding to support its work helping people at risk of the UK’s most common undiagnosed genetic condition.
The new funding from The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK, will enable Haemochromatosis UK to develop a pioneering new 5 year programme to advise and support communities at risk of iron overload from genetic haemochromatosis (GH) throughout England.
The initiative builds upon the charity’s successful launch of postal genetic screening in 2021 and associated research programme, which demonstrated that genetic haemochromatosis is more prevalent than was previously thought. Although Genetic haemochromatosis is common in England, it is rarely diagnosed. Untreated, the condition can lead to toxic iron overload, where the body is unable to process excess iron. This in turn can lead to liver cancer, heart disease, diabetes, serious joint pain and mental health issues.
With the National Lottery’s support, the charity will provide advice and support to patients and clinicians across England, and deliver screening for the condition to families at risk. The charity’s specialist nursing team will provide counselling for those newly diagnosed with genetic haemochromatosis. Genetic screening will be provided to families at risk across England, through the charity’s award-winning genetic testing service.
Haemochromatosis UK has drawn heavily on the lived experience of families living with the condition in drawing up the programme of work.
Richard, a case study in the UK, aged 65, said:
“When you get your diagnosis you have so many questions that your GP can’t always answer. The people at the charity we all spoke to were extremely helpful and knowledgeable. It’s also helped us to be able to inform our wider family about their options to try and help them avoid the problems I had.”
Local MP and campaigner for haemochromatosis sufferers, the Rt Hon Sir John Hayes CBE MP said:
“This is great news for all those with this condition and great news for Spalding too. I have come to know the charity well and the excellent work they do through my role as Chairman of the All Party Parliamentary Group on Haemochromatosis and they will continue to enjoy my full and dedicated support”.
The programme starts later this month, from the charity’s national base in Pinchbeck. For more information about genetic haemochromatosis, or support following a diagnosis, visit www.ironoverload.org.uk.