Cross-community genetic screening launches in Derry-Londonderry This month we're launching a cross-community preventative health initiative in Derry-Londonderry, to raise awareness of genetic haemochromatosis (iron overload). This follows recent press coverage in the Belfast Telegraph and Irish News about the project. Most people have never heard of genetic haemochromatosis. Yet it’s the most common genetic condition on the island of Ireland, as well as in the UK. About 1 in 113 people are affected directly, with 1 in 5 people being carriers for the condition. It's thought that over 1,000 people living in the city are affected. Recent research suggests that fewer than 1 in 20 people at risk locally have been diagnosed. Sarah Fenlon (age 28), from Derry, was diagnosed with genetic haemochromatosis after years of experiencing symptoms. She said: “I would advise anyone with symptoms, especially if you live in an area that is known for genetic haemochromatosis, to get tested. I spent quite a long time trying to find out why I was experiencing the symptoms I had, and I think if there had been more awareness this wouldn’t be the case.” Our charity is working with local community groups including the Old Library Trust Healthy Living Team, North West Cultural Partnership, Discovering Healthy Communities NI and Bogside & Brandywell Health Forum to provide a free genetic health check to the city’s residents. Thanks to the generous support of the Sylvia Adams Charitable Trust, the Friends Against Iron Overload and the National Lottery Community Fund for Northern Ireland, this project will provide free genetic screening for the first time in the city. Charity member Seamus Breslin (age 57) from the Creggan area of the city has helped launch the project locally : “There should be a strategy for screening that doesn’t rely on luck to get diagnosed. I was going to the GP for over 10 years with symptoms. They prescribed depression tablets, pain killers and counselling, but nothing seemed to work. My wife is a nurse and said to keep going…one day I was lucky enough to see a newly-trained GP who tested for the condition. And within 2 months I had a diagnosis. He adds : “They don’t call it the Celtic Curse for nothing… Where Scotland meets Ireland is right here in this city. It’s a hotspot here!” Leaflets with information about genetic haemochromatosis and details of how to order a free health check are available from local community groups and will be delivered to over 16,000 homes across the city in August. Sabrina Lynch, Programme Manager of the Old Library Trust Healthy Living Team said “We at OLT are delighted to be working in partnership with Haemochromatosis UK in raising awareness about this condition. It is important that we are informing our local residents and providing support in both getting tested and having a diagnosis. We are very excited to be involved in this project.” Sinead Murphy, Programme Manager at the Bogside & Brandywell Health Forum welcomed the initiative : "We would encourage all residents within the local community to avail of the testing kits and keep an eye out for the community events that will be taking place. It is so important for everyone to get tested and to raise awareness of this amazing opportunity for people within the area." Chief Executive of Haemochromatosis UK, Neil McClements said: “Early diagnosis saves lives – and every diagnosis starts with public awareness. This cross-community project is bringing people together to raise awareness of the symptoms of this common, but treatable, genetic condition. We encourage people to request a home testing kit or drop in to one of the community group events and get tested so that they can rule out this condition. It’s really prevalent in the north west, so it’s well worth families getting involved.” This project was inspired by local community meetings pre-pandemic. Watch Seamus Breslin talk about his experiences of GH below.