I was a child that never liked meat.
Maybe a party pie… but the thought of a steak on my dinner plate was repulsive. Honestly, I didn’t like vegetables either. You could say I was a difficult child.
With good reason, my parents were concerned about ensuring their child ate a balanced diet. Early on they put their foot down and made the rule… “You can’t leave your chair until your plate is clean”.
But little me had many tactics to outsmart this rule.
One of my best strategies was chewing up my steak and excusing myself for the bathroom, where I’d spit it out and flush it down.
Ten years later, much to everyone’s surprise, I was diagnosed with haemochromatosis.
Haemochromatosis is an inherited disorder that causes an overload of iron. Who knew the kid that hated eating foods with high iron would end up having too much.
Unfortunately an overload of iron isn’t a good thing. It doesn’t make you big and strong like Popeye. It makes you tired and weak.
Over time, the build up of excess iron can cause damage to tissues and organs, including the liver and heart. If left undiagnosed, the disorder can be fatal.
I was lucky, at only twenty years old, I had the disorder brought to my attention and was able to start treatment early. My Dad, however, who passed on the gene to me, spent 50 years not even knowing the disorder existed.
Haemochromatosis is Australia’s most common genetic disorder but its symptoms are relatively common health complaints, making the disorder difficult to spot.
For years I thought that I was a teenager who just really needed her sleep.
Most afternoons during year twelve I would fall asleep for hours after school, but I put it down to working my brain too hard.
On holidays, my friends would get up and head to the pool or gym in the morning while I slept in.
I thought I just really enjoyed sleep. Now I realise the tiredness and fatigue was a symptom of iron overload and I had just never known any different.
What concerns me most, is iron overload flying under the radar.
Haemochromatosis affects around 1 in 200 people of northern European origin.
But while iron deficiency is commonly known, iron overload isn’t.
We asked a random selection of Deakin University students if they knew what haemochromatosis is. Here are their reactions.
So how do you know if you’ve got it?
Tony Moorhead from Haemochromatosis Australia says a genetic test is the only sure way to confirm or rule out haemochromatosis.
But unfortunately, symptoms such as tiredness and weakness can lead people to jump to the conclusion that the cause must be iron deficiency. A further concern is that some iron supplements can be bought over-the-counter without a doctor’s prescription – something I dangerously considered multiple times.
“The consequences of that mistake can be very serious since taking iron supplements in the belief that you’re treating iron deficiency will just add to the problem if the real cause is overload,” Mr Moorhead said.
“It could accelerate the rate of absorption and storage of iron in the body which could do real harm – and worsen the tiredness as well.”
Mr Moorhead says pharmacists play a key role in stopping Australians misdiagnosing and causing themselves harm.
“They can play an important role providing advice to people who have self-diagnosed or used Dr Google to come up with an answer to their problems,” he said.
While it is hard to differentiate between iron deficiency and iron overload just based on observable symptoms, some people with haemochromatosis experience sore joints, unexplained abdominal pain, sexual dysfunction and discolouration of the skin.
Haemochromatosis Australia suggests if an immediate family member is diagnosed or you are experiencing the symptoms mentioned earlier, it is worth raising the issue with your doctor.
“Haemochromatosis can have very serious consequences. But if it is detected and treated early, you can expect to lead a normal, healthy life,” Mr Moorhead explains.
Treatment is fortunately often simple and effective.
According to NOVA, the most common form of treatment is venesection — ‘the removal of between 300 ml and 500 ml of blood (similar to a blood donation) via a needle in the arm’.
My father’s iron levels are too high to donate, but I’m able to donate my blood at the Australian Red Cross Blood Service.
They provide free therapeutic blood service, and each donation through the blood bank has the power to save three lives – it’s a win win.
Unfortunately, excessive iron doesn’t make you superwoman.
People can go through most of their life without knowing they’re affected… until the damage is done.
If you’re interested in finding out more about haemochromatosis, you can visit Haemochromatosis Australia’s website www.ha.org.au or call the Info Line on 1300 019 028.