Mark Williams knows how lucky he is to have been diagnosed with haemochromatosis – as his own father died from liver cancer.
The 54-year-old business consultant knows that as he has the world’s most common genetic disorder, he is 10 times more likely to develop liver cancer.
His father, Mike, died five years ago aged 72 – a week after being diagnosed with a cancer caused by haemochromatosis.
Mr Williams, from Westcliff-on-Sea, Essex, was diagnosed with haemochromatosis after seeking a second opinion over a sore shoulder.
Prolonged shoulder pain caused him to visit his GP last year and when a blood test came back clear he was prescribed painkillers.
“My shoulder was still very painful, so I decided to seek a second opinion at the Nuffield in Brentwood,” Mr Williams said.
“A very astute doctor there noticed that my blood iron levels – or ferritin levels – was high. After a repeat test to confirm. I was diagnosed with haemochromatosis.”
After 12 months of regular blood letting, a process known as venesection, Mr Williams’s blood iron has levelled out, to the point where he can now simply give blood via the transfusion service, to benefit other patients.
“I can’t believe how lucky I am,” he said.
“My dad went his entire life with this terrible condition, and he was completely unaware.
“He thought he’d pulled a muscle in his back, but by the time he went to hospital, he died of liver cancer a week later.
“It was devastating, and such a shock. If I hadn’t seen a doctor who spotted the signs, I could be looking at developing cancer in my 70s too.”
Now the father-of-four wants to raise awareness of the risk of haemochromatosis.
“I’ve sometimes had to explain haemochromatosis to the nurses who are taking my blood to treat me for the condition,” he said.
“It’s really common among Celtic bloodlines like we have in the UK, yet even among health professionals, awareness is really low.
“I have four sons, and I couldn’t get them tested on the NHS even once I was diagnosed – I had to go private.
“Three of them are carriers, meaning they have one gene and could pass it on. The fourth has both genes, so has haemochromatosis.
“It’s crazy that this test is so cheap, but we can’t get it. It would cost the NHS far more in the long run if he went undiagnosed.
“Now, he knows he has to give blood regularly and have his iron levels monitored. That could save his life.”