As part of a new awareness campaign, Sian, Chris and Matt have shared their personal experiences to highlight the significant impact of Genetic Haemochromatosis (GH) in Wales. The campaign aims to raise awareness of a condition that affects many Welsh families and, if left undiagnosed or untreated, can lead to serious physical and mental health complications and, in some cases, premature death.
Genetic Haemochromatosis is an inherited condition that causes the body to absorb and store excessive amounts of iron over time. This iron overload can damage vital organs including the liver, heart, pancreas, pituitary gland and skin. Common symptoms include chronic fatigue, debilitating joint pain, anxiety and depression, although many people remain undiagnosed for years.
Once diagnosed, treatment is often straightforward and highly effective, typically involving regular venesection (blood removal). Uniquely for a serious health condition, many people with GH are also able to become blood donors through the Welsh Blood Service, helping to save the lives of others while managing their own condition.
Evrah Rose, a poet and author from Wrexham who lives with Genetic Haemochromatosis, has worked with Haemochromatosis UK and filmmaker Joe Edwards to help identify Welsh voices by producing a film to share their stories, ensuring that the realities of living with iron overload are heard and understood.
Evrah Rose said:
“Sian, Chris and Matt’s stories, alongside my own, are just a handful of the thousands of people in Wales living with Genetic Haemochromatosis. Too often, people spend years searching for answers while their health deteriorates, only to discover they have been living with a condition that is both diagnosable and treatable. Despite its prevalence and the devastating impact it can have on lives, families and communities, it remains overlooked and under-recognised within our healthcare system.”
“I was passionate about producing this film because awareness changes lives. Every delayed diagnosis is a missed opportunity to prevent unnecessary suffering and irreversible organ damage. By sharing real stories from people across Wales, we are putting faces and voices to a condition that is too often hidden in plain sight. If this campaign encourages just one person to seek testing, one family to learn about their genetic risk, or one healthcare professional to think of Haemochromatosis sooner, then it has already made a difference.”
“That is why we are standing on the steps of the Senedd today. We have written to Members of the Senedd because people in Wales deserve better awareness, earlier diagnosis and a stronger commitment to addressing a condition that affects thousands yet receives far too little attention. We are not asking for special treatment, we are asking to be seen, heard and taken seriously.”
Haemochromatosis UK estimates that more than 21,000 people in Wales (approximately 1 in 150) carry the highest-risk genetic variant associated with Genetic Haemochromatosis (GH), placing them at significant risk of developing iron overload and related health complications.
Research from the University of Exeter has shown that people who inherit two copies of the C282Y variant linked to iron overload face substantially increased health risks, including a tenfold increase in the risk of liver cancer in men, a fourfold increase in the risk of liver disease, and double the risk of developing arthritis.
Neil Irwin, spokesperson for Haemochromatosis UK, said:
“We are grateful to The National Lottery Community Fund in Wales for supporting this project, enabling us to share these important stories while providing information and support to families and communities affected by Genetic Haemochromatosis.”
“We have written to every Member of the Senedd seeking engagement on this issue, so that they can better understand both the prevalence of the condition in Wales and its impact on individuals, families and the NHS. We are extremely grateful to Sian, Chris, Matt and Evrah for sharing their experiences and helping us raise awareness.”
Today (18 September), the charity is also launching its new ‘Pass It On Family Pack’, available to anyone receiving a diagnosis of Genetic Haemochromatosis. The pack is designed to help individuals inform relatives about the inherited nature of the condition and encourage family members to seek information, support and, where appropriate, testing.
Haemochromatosis UK operates a national helpline for anyone affected by the condition or concerned about their risk. The charity also provides access to genetic testing services for those who encounter difficulties obtaining testing through the NHS.
Further information is available from the charity’s website:
