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'It blows my mind that this condition isn't better known'

Cathy Brooks was diagnosed with haemochromatosis after she felt unwell for two years. She tells Deirdre Reynolds how her blood donations help others and why greater awareness is needed

Cathy Brooks, with her dog Ernie, says she wants more people to be aware of haemochromatosis.

Deirdre Reynolds

Caring Cathy Brooks has been giving blood every three months for the past five years - but the simple act of kindness hasn't just potentially saved other lives, it's transformed her own, too.

Like many, Dubliner Cathy had never even heard of haemochromatosis when she began suffering some of its most common symptoms, such as aching joints, in 2011.

And she recalls how repeated trips to the doctor's office over the course of two years did little to change that at first.

"I just felt off kilter," remembers Cathy (49). "I couldn't put my finger on it.

"I had hot flushes, a few aches in my joints, I just didn't feel myself. My mother had just died, so at the time I just thought, 'This is my body reacting to my grief'.

"My doctor didn't even mention the word haemochromatosis. I'd never heard of it. When I was eventually diagnosed, I was like 'haemochroma-what?'"

She is not alone. Despite Ireland having the highest rate of haemochromatosis in the world, awareness of the hereditary condition - which causes an iron overload in the body - is at the other end of the spectrum, something the Irish Haemochromatosis Association is now hoping to rectify.

For Cathy, an alumni relations manager at UCD, it wasn't until she went along to a women's health clinic suspecting early menopause, known to provoke similar complaints, that the disorder known as the 'Celtic Curse' was also uncovered.

"That was really the beginning of everything," she says. "I walked in, I told the doctor my symptoms, and she said, 'OK, it's probably one of two things, or it could be both because early menopause can be brought on because of haemochromatosis'.

"In the beginning, I was kind of, 'Oh God, what the hell is this?' I went on all these Facebook pages and that was a disaster. But I'm quite pragmatic in my outlook. So just the fact that I had a diagnosis, then I could begin to say, 'OK, what do I need to do?'"

Up to 20,000 people in Ireland are believed to suffer from undiagnosed haemochromatosis, where excess iron absorbed from the diet is deposited in organs including the heart, liver and pancreas.

Without treatment, it can lead to premature death; caught early, however, before organ damage has occurred, it is treatable by regularly removing some of the blood with a procedure called a phlebotomy.

"Most people don't get diagnosed until they're older," explains Cathy. "Obviously women, because we have periods, we're already losing blood every month, so we don't necessarily show symptoms as quickly as men might.

"Because I was early menopausal, and I had symptoms, I was able to get diagnosed pretty young. So I hadn't built up as much iron in my body as I might have if I was either male or older.

"I go for an annual check-up in St Vincent's Hospital, and they take your bloods, look at your heart, your cholesterol, your blood pressure, your kidney, your pancreas - and they're all fit and healthy."

Dog lover Cathy also donates blood at the Blood Donation Clinic in Stillorgan every three months to help manage the condition. Knowing that her iron-rich blood isn't going to waste has been an unexpected upside to living with haemochromatosis, she says: "There's no way to get rid of the iron other than literally remove the blood.

"I felt quite strongly that if I have to give blood every few months for the rest of my life, I want my blood to be used. Some blood donation clinics facilitate that, and luckily there is one near me, so I've been doing that for the last five years.

"The Irish Blood Transfusion Service do a really nice thing where, about two weeks after I've given blood, I'll just get a text saying, 'Your blood has been used in Waterford General Hospital or the Mater Hospital'. It's a simple thing, but it's so powerful.

"You feel so good about yourself. You just kind of feel, 'I'm doing good in the world'."

With one in five Irish people carriers of the faulty HFE gene, Cathy is urging others to explore their family health history, especially women facing menopause.

"My experience was a positive enough one, but it just blows my mind that this isn't better known," she says of the little-talked-about condition. "Like this is wrong, as well as us not knowing about haemochromatosis, about women not knowing about the menopause. When I got diagnosed with the menopause I made a pledge to myself to say it loud and say it proud.

"My advice to women out there - or men - is listen to your body. If you feel something's off, it is off and go see your GP about it."


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