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"Diagnosis and management of haemochromatosis"

About: New South Wales

(as the patient),

I currently have a venesection every two months, to treat haemochromatosis. The pathology nurses at the centre I attend are wonderful. My current GP is also wonderful, he understands I continue to be plagued by fatigue, and we are trying to find solutions/reasons for this. I am currently monitored by my GP and a gastroenterologist, and see a cardiologist yearly.

I was initially diagnosed with haemochromatosis in 2008. I no longer see the GP I saw in 2008 – who did not seem to believe that women developed haemochromatosis and that venesections were not required. This was in spite of the fact that I had a hysterectomy at a relatively early age, which was noted in my medical file.

At the time of diagnosis, I was unaware there was such a thing as iron overload, or that it could cause major health problems if left unattended. My major issue is that for so long I felt so unwell and unheard. My fatigue was such that I left my job, which would have been unnecessary had I been diagnosed when I first starting feeling increasing unwell. This in turn made me angry and unbelieving that haemochromatosis as a condition does not receive more attention.

I do understand there is debate around the prevalence of actual ill health associated with iron overload. After talking with other people with this condition, it is my belief that some GPs may be unaware of many aspects of haemochromatosis.

The good thing is that two younger relatives were consequently diagnosed, and are having venesections. Hopefully this will prevent them developing serious health problems in the future.

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