The first week of June is International Haemochromatosis Awareness Week. This genetic disorder affects thousands of Australians; yet, it is under diagnosed leading to serious health complications that could be prevented with early detection and treatment.
Kala Body founder Chloe was diagnosed with haemochromatosis a few years ago. In this post she shares her story.
Many years ago, before Kala Body was even an idea, I was living in London and generally enjoying life. I had a great job and a busy lifestyle, so it was easy to assume that was why I felt so tired all the time.
But as the months went on, my fatigue was getting more pronounced. I’d zone out during conversations, unable to keep track of the last words I’d said. I was constantly feeling run down, despite getting plenty of sleep and eating lots of iron-rich foods. It was getting harder to enjoy life when I felt so tired all the time.
And then, by chance, my uncle was tested for a genetic condition called haemochromatosis. Once he was confirmed as having it, two of his brothers were also tested and found to carry the gene. My family called me and suggested that I get tested also.
At the time I had no idea what haemochromatosis was. But I went to the local hospital and requested a blood test.
It came back as positive for the condition. A doctor explained that the reason I was feeling so tired all the time wasn’t because I wasn’t sleeping enough or eating well.
It was because my body was couldn’t properly process the iron in my body and it had reached dangerous levels.
What is haemochromatosis?
Haemochromatosis is a common genetic disorder where the body absorbs too much iron and can’t get rid of it. The excess iron is stored in the body and over time this leads to iron overload.
If left undetected, the excess iron can cause organ and tissue damage that can result in premature death. Because the early symptoms often look like other age-related illnesses or lifestyle factors, haemochromatosis tends to be under-diagnosed. It’s often detected as a result of genetic testing among family members of those diagnosed with the condition.
When iron builds up and gets to a toxic level it’s dangerous – it’s like rusting from the inside. The excess iron can show up as a darker pigmentation on the skin – like a tan. On the inside, the iron can sit in the liver and cause cirrhosis; or move into the brain leading to long-term cognitive issues.
A number of organs can be affected by iron overload and, without treatment, haemochromatosis can cause premature death.
The disorder predominantly affects people with Celtic and Northern European ancestry. It’s not known how exactly the condition originally developed but some researchers suggest that it’s a result of the lack of iron-rich diets in northern Europe. A family history of liver disease can often be a sign of potential haemochromatosis condition.
I was lucky to have been diagnosed relatively early with inherited iron disorder. With an understanding of the condition, I could begin to treat it.
The treatment for haemochromatosis is by removing excess iron stores from the body through blood withdrawal (known as venesection). Every few months I head to the hospital to have an iron test and a blood withdrawal.
I also manage my condition through what I eat. While I eat red meat, I do so in moderation and am careful not to eat it alongside foods that increase iron absorption, like vitamin C. I also tend to avoid iron-fortified foods (interestingly, a lot of breakfast cereals contain added iron).
As well as regular blood tests, I’m now very aware of changes in my body – feeling tired, experiencing aches in my limbs, and my general energy levels.
I wrote this post not only because I wanted to share my story of living with haemochromatosis and to make you aware of the potential symptoms, but also to share how important it is to be aware of your body and what’s ‘normal’. My first symptom was feeling fatigued, which can be a symptom of many disorders and diseases and one we may have a tendency to ignore as merely a condition of ‘life’.
If you’d like to find out more about haemochromatosis, Haemochromatosis Australia has some helpful information and guides on their website.
World Haemochromatosis Week runs from 4-10 June 2018.