Fighting the “Celtic Curse” – Interview with David Head, Haemochromatosis UK
We were lucky enough to speak with David Head of Haemochromatosis UK following his talk at our Family History, Science, and Irishness event in June. As we learned from his informative talk, haemochromatosis is a genetic condition which, if untreated, can lead to the build up of iron to toxic levels in organs, tissues, and blood. Pertinently for Double-Helix History, combatting the disease is intimately tied into improving public understanding of DNA and genetic family history.
As David outlined, the condition has its origins in prehistoric Celtic populations and is linked closely with the Irish diaspora: the mutation “originated in Ireland at least 4,000 years ago and has been contained within the island of Ireland ever since, until we started spread our wings a bit in the last couple of centuries”.
What is particularly interesting is that this condition became prevalent as “when people were living 35-40 years in the Bronze Age it was actually a survival advantage” to have additional iron in your blood stream – even today “we know that athletes will take iron supplements to boost their blood cell count and their stamina”.
Modern life has, however, led to the mutation’s negative impacts: “nowadays we live much longer and the iron continues to build up . . . into their 50s iron has been building up in haemocromatotics to toxic levels and causes a lot of damage”.
Although not curable, the condition is reasonably straightforwardly treatable by regular venesection (blood-letting) – the key to mitigating its damaging effects to organs, joints, and mental health is therefore to increase awareness of the condition and its transmission – this is where the term “Celtic Curse” plays an interesting role. As David explained: “we are conscious that the word curse is a little bit controversial and edgy, it does even have religious connotations in some cases, but we do need to spread the word and it’s a phrase which helps that happen. People can relate to being Celtic and it trips off the tongue. We know for a fact that when we use it we get radio coverage, media coverage, and if that’s going to save lives then we think that’s important”.
Whilst sensationalism and hyperbole can potentially have damaging impacts on public understanding and consciousness around health and science, particularly in relation to DNA, in this case all publicity is good publicity and there are a number of examples of the effectiveness of this approach here, here, and here.
As with many aspects of genetic family history, DNA testing is a “mixed bag” – “not everyone who has the mutations will go on to load iron . . . blood chemistry tests are usually the starting point”. “Where DNA testing is hugely important is if someone is confirmed as being haemochromatotic – then direct family members should be tested – we know that that identifies other patients who are loading iron and didn’t know beforehand”.
Those conversations with living relatives often lead to reflections and, potentially, research on family history: “many patients talk about illnesses their parent and grandparents and other family members have had that we know now in hindsight have been caused by iron overload . . . They know they lost a grandparent to, say, liver cancer but it won’t say haemochromatosis on the death certificate”.
Linking up with Double-Helix History and taking part in our public event was a particularly good fit for Haemochromatosis UK, and had a direct impact on the audience, as David explained: “We had a room full of people there – one person was affected, perhaps 10% of people have heard of the condition. After the talk I already know there’s at least 4 people who are going to talk to their doctor about the condition. I wouldn’t wish it on anybody but if we’ve helped someone identify a problem then we’ll be pleased”.