Haemochromatosis and James Minter, the original iron man
Having a magnetic personality can be a deadly diagnosis, as James Minter learned.
All for a good cause: James Minter, with wife Maggie at their home in the Herault, agrees that laughter is the best medicine. James Minter and his Belgian wife Maggie left Bourton-on-the-Water, Gloucestershire, for France in April 2013. The plan was to rent in various locations around the country and then decide where exactly they wanted to live. Seven months later, however, the couple bought a winegrower’s house in the middle of Saint-Chinian, in the Languedoc-Roussillon region of southern France.
Maggie is fluently bilingual but James – who was born in Oxfordshire and had a career in IT spanning 35 years before he took up writing in 2009 – speaks schoolboy French.
“Maggie is very active in the community. She’s involved with the International Club and teaches English to French professionals,” James tells me. “For the most part villagers are very welcoming. There’s a slight resentment towards outsiders but we bring in money – although we also push home prices up.”
Writing is not new for James, but producing works of fiction is. “Prior to fiction, I wrote books and articles but all of a technical nature. I was the computer guy – selling, repairing, teaching, writing about, using and abusing them. I grew up with Bill Gates, the PC and Windows. PCs still occupy a good deal of my time but now they are secondary to writing.”
James’s latest book The Unexpected Consequence of Iron Overload (UK: CreateSpace; see box below for review) serves two purposes: it allows him to follow his narrative passion from which, like his other books, he draws on personal experience and second, it’s a fund raiser as all sales go to The Haemochromatosis Society UK (www.haemochromatosis.org.uk).
In 2004, James was diagnosed with Genetic Haemochromatosis (GH). “A person’s iron level should be around 50 but mine was 1014,” he explains. “The disease is a defective gene that doesn’t turn off absorption of iron by the body from your diet. So while iron is essential to allow red blood cells to carry oxygen to the body, too much stored iron in the body can be deadly. Iron is usually stored in the liver but the overload can be in the pancreas, heart muscles, bone marrow – and in serious cases, it could end up in the brain and kill you.”
Essentially, the problem is that we eat far more regularly and often food that has iron supplements. Add to this the fact that we are living 30 years longer … well, that’s huge for iron accumulation. Treatment is free – you generate new blood by giving blood – so drug companies have no real motivation to do research. There are an estimated 4 million people in northern Europe, and a similar number in North America, unknowingly walking around with this disease. And so James is trying to raise awareness and funds.
He points out that reading a book appeals to older generations and, as this demographic is more susceptible to GH, he wanted to encourage them through his novel to ask for a ferritin test the next time they go for blood work.
“I just want to get people talking. With GH, initially you get tired, have mood swings and even depression. You can develop liver problems, diabetes or arrhythmia. But these are symptoms that could be associated with many other ailments so unless a doctor knows to look for GH, he or she treats the presenting condition, not the underlying ones.
“Being tired was normal for me. For decades, I have been a regular blood donor twice a year, and each time I felt better. But I didn’t know why. I was prone to nose bleeds, I mean I’d drink Guinness and I’d have one. I didn’t realise that my body was trying to offload blood.
“After one of these incidents, Maggie encouraged me to go a doctor and have a genetic test. Being told I had haemochromatosis made sense. Even though it was not diagnosed as such, I had lost three family members from the condition, in the Seventies – my sister and my mom, both suicides, and my father to colon cancer. My treatment was to give 26 pints of blood in 26 weeks, using stores of iron. Maintenance now is a pint every three to four months.”
When I approach the subject of French healthcare, I am shocked to learn from James that not only is the village doctor in Saint-Chinian aware of haemochromatosis, but 25 out of the 2000 residents have the disease. He sums it up in two words: The Celts.
“If you trace Celtic roots from Turkey through Italy, along the South of France up to the west coast – Brittany and Normandy – over the Channel to Devon, Wales, Scotland and Ireland, and across to Norway and finishing in St Petersburg, Russia, you’ll see this enormous arc and this is where the main incidents of haemochromatosis conditions are found.
“There is an upside to carrying this disease in that all living organisms, including bacteria, require iron to survive. The red blood cells transport oxygen but the white blood cells are antibodies for the immune system. In general white blood cells carry less iron but for haemochromatosis patients, the amount is even lower.
“During the Black Death, the plague that hit Europe in 1347, a bacteria killed millions and millions across the world but those who survived had the defective haemochromatosis gene. These people had less iron in their white blood cells and as a result the disease could not thrive within them. It therefore produced a huge pool of the population with this gene, who went on to procreate. It was a case of ‘survival of the unfittest’.”
“Good old British humour without bad language ...”
Thirtysomething techie Jimmy Kavanagh is unaware that he has Haemochromatosis. One night at a Microsoft software launch in London, Jimmy is involved in a life-saving event that, when it hits the headlines, draws the curious attention from the KGB and CIA. Throw in a love interest or two, some bizarre childhood tales and an ability to open doors without a key and you have a plot that is both comical and informative ... and, more importantly, supporting a cause.
James Minter is available for group talks. The Unexpected Consequences of Iron Overload can be purchased in English at www.amazon.fr (€7.88). For more see www.jamesminter.com