These are the symptoms to look out for one of Merseyside's most common undiagnosed genetic condition.
Genetic haemochromatosis (iron overload) is a treatable condition thought to affect over 9,000 people across the region. Although it is common, it is rarely diagnosed. According to charity Haemochromatosis UK, recent research suggests that fewer than 1 in 20 people at risk locally have been diagnosed.
Untreated, the condition can lead to toxic iron overload, where the body is unable to process excess iron. The symptoms to look out for according to the NHS are:
Early symptoms
- feeling very tired all the time (fatigue)
- weight loss
- weakness
- joint pain
- an inability to get or maintain an erection (erectile dysfunction)
- irregular periods or absent periods
Later problems
As the condition progresses, it can also cause problems such as:
- loss of sex drive (libido)
- darkening of the skin, if you are white – you may look permanently tanned
- tummy (abdominal) pain and swelling
- yellowing of the skin and eyes (jaundice)
- feeling thirsty all the time and needing to pee frequently
- severe pain and stiffness in your joints, particularly in the fingers
- chest pain
- shortness of breath
- swelling of your hands and feet
- an irregular heartbeat (arrhythmia)
- the testicles getting smaller
This week, actor Stephen McGann (Call The Midwife) and charity Haemochromatosis UK are launching a preventative health initiative to raise awareness of the condition. Genetic haemochromatosis can cause liver disease, cancer, heart disease, chronic fatigue, diabetes, severe joint pain, sexual health issues, dementia and mental health issues.
It can affect men and women at any age, but is typically diagnosed when people reach their 40s, 50s or 60s. Stephen’s own family have been affected by iron overload.
He said: “Liverpool’s Irish heritage means many local people can be carrying this hidden condition without knowing - just like I was. So, I recommend that people get themselves checked and be in the know, rather than in the dark. Getting tested will help you and your loved ones live your healthiest life.”
Stephen McGann is Patron of Haemochromatosis UK, a patient-led charity which is providing genetic screening by post this month across Merseyside. Leaflets with information about the condition with details of how to order a postal health check will be delivered to over 24,000 homes across the city during November.
A home testing kit is then delivered by post. Once the kit is returned, within 2 weeks, the charity will write with results to everyone tested and their NHS GP, with information about their personalised test results and what to do next.
Chief Executive of Haemochromatosis UK, Neil McClements said: “Early diagnosis saves lives – and every diagnosis starts with public awareness. This project is bringing people together to raise awareness of the symptoms of this common yet treatable, genetic condition.”
Rebecca, aged 53, from the Wirral had never heard of genetic haemochromatosis before a chance diagnosis.
She said: “None of us had heard of the condition before. I was diagnosed after my Mum was tested and discovered that she had it. My brother and my Mum’s sister got tested - they have it too. Our family are of Irish and Scottish descent, which we now know makes us higher risk."
Trevor, aged 50, from Liverpool struggled with symptoms for years, he said: “I was diagnosed in my early forties, after feeling tired and unwell without being able to explain exactly why. Before my diagnosis I’d been to a different doctor a couple of years earlier for the same reason and was just told I was probably working too hard…”
For more information about genetic haemochromatosis, or support following a diagnosis, visit www.ironoverload.org.uk.
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