I blamed my desperate tiredness, aching joints and lack of energy on being a mum. In fact I had iron poisoning
Freelance journalist Christine Megson, pictured at her home in Tedburn, St Mary, near Exeter in Devon, was diagnosed with haemochromatosis
This time last year, I had convinced myself that I was going to die. I wasn’t going to tell anyone, I would just let whatever was making me feel so ill take me away.
I have a wonderful family, three beautiful boys, a great job and a loving husband, but I didn’t want to be around. I just wanted to slip off somewhere and never come back.
Initially, I’d blamed the desperate tiredness, shooting abdominal pains, aching joints and lack of energy on being a busy working mum.
Anyway, as a freelance journalist, illness was not an option; I just had to get through it. I hid it well, but my husband Shaun watched me change. The fun-loving, enthusiastic woman he married had gone. Instead, he found himself with a forgetful, miserable, bumbling negative wife whom he said he didn’t recognise.
He begged me to go to the doctor. ‘Why’ I said. ‘It’s just tiredness, and they’ll only tell me to rest — fat chance.’
I hadn’t told him about the abdominal pains, because I didn’t think he needed to know. For months, I buried any fear about the pain and told myself it didn’t matter, it was probably to do with my age and it would pass.
Shaun was understanding, but it must have been more worrying for him than I realised. Our sons, aged five, seven and 11, were a real handful and I could only look on — I didn’t have the energy for them. I know now that Shaun feared the worst but said nothing.
Working from home, he took on more than his fair share of the family chores and we muddled along.
The Megson family: From left to right is Charlie, father Shaun, mother Christine, Henry and William
One Sunday, when we’d had friends over for lunch and a good bottle of wine or two, I cracked. I was sitting by the fire with a girlfriend who had recovered from ovarian cancer and who runs a helpline for fellow sufferers all over the world.
She was so strong, and as she explained in detail what her friends had been through, I finally said it: ‘I think I’ve got cancer.’ I will never forget the look on her face when I described the symptoms. Very quietly, she asked me — not told me — to go to the doctor.
After months of misery, the game was up, and out it all came in sobs. I told her I was so sure I was dying that, in my head, I had written individual notes to my three boys telling them how much I loved them so they had something to read when I was gone. It was the lowest point.
Our next step was the GP. Being a young mother herself, my doctor recognised the tiredness and the helplessness and was adamant that ‘the bad stuff’ (the imaginary cancer) should be ruled out quickly. A battery of blood tests and scans followed — all clear.
Then a second wave of bloods to investigate further — again all clear. It was a relief, but something was still not right. Then she found it.
The phone call came while we were driving to London for a weekend — ‘I’ve got something,’ she said, and went on to explain I had raised levels of a protein called ferritin, which binds iron in the blood. High levels suggested I was storing too much iron in my body and one more test might confirm I had a genetic condition called haemochromatosis.
'An estimated one in 200 Europeans have genes linked to Haemochromatosis but only a small percentage will actually suffer any harm from it'
There it was, the first time I had heard the word, and the root cause of the imaginary deathbed scenario playing in my head all of this time. Hee–mo-chro-ma-tosis. My enemy had a name.
It’s a long word for a hereditary disorder that causes the body to retain iron and I was saturated with it. The body uses iron from food to make haemoglobin, the red pigment in blood that transports oxygen round the body.
Haemochromatosis sufferers are genetically predisposed to absorb too much iron from their diet via the gut. As the body can’t expel excess iron naturally, it is deposited around the organs — mainly in the liver, but also the pancreas, heart, endocrine glands, and joints, where it begins to build up.
It triggers a slow poisoning, and, as in my case, the early symptoms — including depression, exhaustion and joint pain — don’t present until the patient is in their 40s.
Christine described how haemochromatosis changed her in to a different person from the one her husband Shaun married
If left untreated, some patients go on to develop life-threatening illnesses such as diabetes, cirrhosis, cancer, arthritis, and heart disease.
For a disorder that no one seems to have heard of, it is surprisingly common. An estimated one in 200 Europeans have the genes linked to it, but studies in Canada, Ireland and Australia suggest that only a small percentage will actually go on to suffer any harm from it.
'If haemochromatosis is left untreated, sufferers can develop life-threatening illnesses such as diabetes, cirrhosis, cancer, arthritis, and heart disease'
Professor Roger Williams, of the Institute of Hepatology, says the proportion of people who will actually develop symptoms is somewhere between 10 to 15 per cent. ‘We do not know why some people with genetic haemochromatosis develop the disease and others don’t — some studies have been done, but more research is needed.’
The Haemochromatosis Society says that people are suffering entirely preventable diseases and even premature death. The charity’s Janet Fernau highlights one story of a patient who was on the waiting list for a transplant because he had a severely diseased heart. He also had arthritis in one ankle, was a type 2 diabetic and suffered from forgetfulness.
‘He was a GP and had not spotted haemochromatosis as the cause of his ill-health — yet following treatment his symptoms improved to the point where he was taken off the transplant waiting list and was able to resume his work,’ says Janet.
‘Unfortunately, by the time he was diagnosed, the iron load meant his other ankle and five knuckle joints had been so damaged he had to have replacement joints.’
Intriguingly, the GP realised his father must have had the problem, too. I was lucky; my iron load was not yet at damaging levels. Despite the Iron Lady jokes everyone made, the relief was fantastic. Just to see all those vague symptoms listed on one piece of paper with a heading ‘Haemochromatosis’ was the beginning of my recovery.
After treatment, Christine is now getting better, and can look forward to a healthy old age
The treatment was painless and cheap. There is no way to remove iron from the body except via the blood — the body then starts to use some of the excess stored iron to make new red blood cells.
Every pint that’s removed takes with it 200mg of iron and lowers ferritin levels by 25. As I had a ferritin count of 900, it was going to be a long haul. The blood-letting began; a pint every two weeks at first, to give the body time to adjust, but after the first two sessions I hit a physical low — I had become anaemic. My body was not re-making the lost blood fast enough, but after a rest from treatment and an adjustment to three-weekly visits, the programme was well underway.
The haematology unit at my local hospital became a familiar place; I was on first-name terms with all the nurses and we swapped family stories.
During the holidays, the boys squabbled about whose turn it was to come with me and see the blood. Show-and-tell at school was interesting for a while, with my youngest drawing gory pictures of me in hospital daubed in red. While my blood was pouring out, leukaemia patients around me were having life-saving drugs pumped in. Bag after bag of blood was sent for research. It couldn’t be used for transfusions to other patients until my iron levels were back to normal.
As the months went by, I became acutely aware that I was getting better. I am now in the ‘maintenance phase’ and will need to give blood routinely for the rest of my life.
Instead of years of chronic disease or even premature death, I can look forward to a healthy old age. As for my family, Shaun has been tested and is clear, and my mother and siblings have been screened, too. There is a chance one of my three boys may carry the haemochromatosis gene and pass it on to future generations.
I only hope that by the time they are old enough to be tested, more will be known about the effects of iron overload, and it won’t just be, haemo-chroma-what
For more information, visit www.haemochromatosis.org.uk