When Rachael Wheeler was 18 a simple blood test showed her iron levels had reached 618.
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A normal range is between 25 and 150.
This is when the word "haemochromatosis" was first uttered to the then university student.
"It is basically the opposite of anemia," Ms Wheeler said.
"But you generally have the same symptoms, if any.
"The tiredness I just put down to normal feelings of someone at uni, I had been up all night or I hadn't eaten properly.
"I never expected it to be haemochromatosis, I didn't even know what that was."
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Haemochromatosis is carried by one in seven people and affects one in 200 but is is often under-diagnosed because the symptoms of tiredness, muscle weakness and joint pain, are generic and non-specific.
The condition causes the body to absorb too much iron from food.
This excess iron overloads body tissues, damages organs and can cause premature death if untreated.
"Basically the treatment is to give blood," Ms Wheeler said.
"This sounds very simple and something you can just go and do at the blood bank, which is what I did for a while, but then I got banned because I had too many reactions.
"Now I have to get a referral from a GP to a physician who can then refer me to the day surgery to have my blood taken that way.
"I think there is definitely confusion around the disease in the medical industry and I was lucky the doctor I saw at uni was aware of it and got me to do the genetic test after three high readings."
Ms Wheeler said the genetic test is only "free" if you record three high iron levels.
"I am the first in my family to be diagnosed with the condition so we then went to get all my immediate family tested as well," she said.
"But there was some reluctance by some doctors to test my grand parents because of their age.
"They didn't see the point.
"But we got it done and we now know they all carry one gene but I have two genes."
Now 26 years old Ms Wheeler said her condition is "well managed" and doesn't stop her from doing anything.
"I travelled a lot and the only time it was an inconvenience was when I knew I was due to get my blood taken and I had to organise it overseas," she said.
"Apart from that I forget I have it most of the time. We caught it early, but if it went untreated and iron levels reached more than 1000 that is when damage can occur."
World Haemochromatosis Week runs from June 3 to 9 and aims to shine a light on the most common genetic disorder.
For more information visit ha.org.au
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