Despite being the UK’s most common genetic disorder, haemochromatosis - a medical condition which causes blood to absorb too much iron - is not widely known about.
But its effects can be devastating as it can cause the breakdown of vital organs over time if left untreated.
It’s a hereditary condition which affects around one in 150 people – and Adam Draper, general manager of Lytham’s Clifton Arms Hotel, is one of them, after being diagnosed two years ago at the age of 37.
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Since then, its effects on him have been contained by regular trips to Blackpool Victoria Hospital to have 500ml of blood removed, allowing the body to generate new blood and in turn reduce the iron levels.
But just last week, Adam found himself suddenly feeling unwell at work and had to have a five-day stay in hospital to resolve the issue – an experience he hopes is a rarity but could reoccur.
The Clifton Arms Hotel will host a black tie dinner on Friday, July 15 in support of Haemochromatosis UK, a charity run by people with the condition to support anyone affected across three key areas - support, education and awareness and medical research.
"It is the UK’s most common genetic disorder but is often misdiagnosed, sometimes resulting in irreparable damage or even death,” said Adam.
"I was 37 before I was diagnosed and needless to say I had never heard of Haemochromatosis, let alone pronounce it.
"Around this time in 2020, I had spent a week in hospital after becoming unwell and had been diagnosed with heart failure and liver disease.
"Shocked as to what had caused it, I was released and treated for those conditions.
"The Haemochromatosis diagnosis came only after a three-month review with the liver nurse, when she asked if I had ever had my iron levels tested.
"A week after a blood test, she called me, to tell me I had hereditary Haemochromatosis, or ‘Iron Overload’.
"My ferritin (iron) level was 3200 ng/ml, which was very high. A usual level for adults is between 50 and 100. I had an enlarged liver and heart failure.
"I was apprehensive when told the treatment involved having my blood drained regularly, but I need not have been. I have had regular venesections roughly every two months without any problems.
"Unfortunately, though, there is no cure. Doctors can treat it safely and effectively by removing blood from your body on a regular basis just as if you were donating blood, to reduce your iron levels to normal.
"My ferritin level is now down to 501, so still a way to go to hit the maintenance target of 50, but due to the treatment, my heart has improved to near normal and I continue to go from strength to strength.”
Adam adds that hereditary Haemochromatosis is not easily diagnosed, as the symptoms are so varied and iron is not tested in regular blood tests so it is not easily picked up on.
"”Despite being the UK’s most common genetic disorder, it is also not well known by medical professionals, which is why the charity is so important in raising awareness,” added Adam.
"I was very fortunate to have been diagnosed at a relatively young age and before it had caused irreversible damage, so raising awareness is really important.”
This week July 4 to 10 is actually Haemochromatosis Awareness Week, with families up and down the country holding their own events as part of ‘The Great Iron Brew 22’
The dinner at the Clifton Arms Hotel on July 15 starts at 7pm and will include live entertainment, a charity raffle and an auction. Details of tickets are available from the hotel and Adam and colleagues have been delighted with the support for it so far.
"I hope we have a really successful evening,” he said. “It’s a really important cause and it is vital to raise awareness as well as funds.”