Genetic haemochromatosis is generally accepted to be very underdiagnosed, and one of the key reasons for this is an understandable tendency to diagnose and treat the complication as presented, rather than delve further to identify an underlying cause.

For example, mental health issues and fatigue are often attributed to workload and to stress, liver problems to diet and alcohol, and joint disease to ageing and injury. Diabetes is generally attributed to lifestyle factors and in most cases, this is quite appropriate. Indeed, a recent article, published in the Guardian from Diabetes UK showed that the number of people under 40 diagnosed with Type 2 Diabetes has jumped a staggering 23% in the period 2016/17 to 2020/21. Their Chief Executive, Chris Askew, concurs that there are multiple risk factors for Type 2 diabetes- including genetics.

It is our belief, at Haemochromatosis UK, that a significant number of people with diabetes will be experiencing some of the other symptoms of Genetic Haemochromatosis and should be investigated and tested for iron overload, especially those with a family history of Haemochromatosis.

Recent research conducted by Professor David Melzer and his team at Exeter University Medical school (2019) revealed the number of additional cases of diabetes every year in the UK caused by GH. For men, the excess number of cases diagnosed were 2,580 and for women the number was 552.

Research frequently notes that there is a relationship between iron stores and insulin sensitivity, demonstrating that stored iron has a negative impact on insulin action, which may have an impact on a patient’s diabetic control and need for increased medication.  This also tells us that there is significant potential to reduce the burden on our highly pressured healthcare services. Analysis from the Haemochromatosis UK ’Cost of illness’ report showed that chronic conditions, like Type 2 diabetes has excess costs of £17.95 million-- Early diagnosis not only saves lives- it also saves money.

Through fundraising and all the work Haemochromatosis UK does amongst Clinicians, nurses and communities, raising awareness is key. Genetic Haemochromatosis isn’t rare - but it’s rarely diagnosed. With the advent of cheaper, more accessible genetic testing for suspected patients and family screening, the diligent use of simple blood tests, and increased use of MRI technologies, the average age and average time taken for diagnosis of GH should continue to fall. Pushing back diagnosis to the earliest stages could mean that patient with GH may never have to experience ill-health like diabetes.