Free genetic screening available in Derry for ‘Celtic Curse’

A charity which raises awareness of haemochromatosis, a condition known as the ‘Celtic curse,’ is offering free genetic screening to people in Derry.

Friday, 13th August 2021, 1:42 pm
Sarah Fenlon was diagnosed with genetic haemochromatosis after years of experiencing symptoms.

Genetic haemochromatosis is the most common genetic condition in Ireland, although many people have never heard of it and it is rarely diagnosed.

It is thought to affect 1,000 people in the city, however, fewer than one in 20 have been diagnosed.

The Haemochromatosis Society, a patient led organisation, has sent leaflets to 16,000 homes in the city offering the free health check.

The condition is treatable but if left untreated it can lead to toxic iron overload, where the body is unable to process excess iron.

Genetic haemochromatosis can cause liver disease, cancer, heart disease, chronic fatigue, diabetes, severe joint pain, sexual health issues, dementia and mental health issues. It can affect men and women at any age, but is typically diagnosed when people are over 40.

Symptoms include fatigue, joint pain, liver disorders, heart problems, stomach pain or discomfort and skin problems.

Local woman Sarah Fenlon was diagnosed with genetic haemochromatosis after years of experiencing symptoms.

“I would advise anyone with symptoms, especially if you live in an area that is known for genetic haemochromatosis, to get tested,” she said.

“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.”

Creggan man Seamus Breslin, who was going to the GP for more than a decade with symptoms, has called for a ‘strategy for screening which doesn’t rely on luck’.

He described the city as a ‘hotspot’ for the genetic condition.

“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!”

The Haemochromatosis Society is working with a number of local community groups to provide the free genetic health check to Derry people. They include the Old Library Trust Healthy Living Team, North West Cultural Partnership, Discovering Healthy Communities NI and Bogside & Brandywell Health Forum.

Chief Executive of Haemochromatosis UK, Neil McClements, said: “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.”

Local residents can order a free health check kit using the leaflet which is being distributed to over 16,000 homes in the city during August. There will also be a number of community events taking place to raise awareness of the offer.

Sabrina Lynch, Programme Manager of the Old Library Trust Healthy Living Team said: “It is important that we are informing our local residents and providing support in both getting tested and having a diagnosis.”

Sinead Murphy, Programme Manager at the Bogside & Brandywell Health Forum, added: “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.”