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Dublin: 2°C Thursday 3 December 2020

It robs people of the basics of life': Irish families bring Huntington's campaign to Vatican

Irish people living with Huntington’s Disease will have an audience with Pope Francis tomorrow.

Image: SIPA USA/PA Images

IRISH PEOPLE LIVING with Huntington’s Disease (HD) are to have an audience with Pope Francis in Rome this week and have said they are delighted that the illness is finally being recognised on such a big platform.

Tomorrow, Irish families will be among a group for a historic meeting in Rome which will see the biggest ever gathering of people with HD. It will also be the first time that a sitting Pope will have mentioned the disease.

HD is a rare, hereditary neurodegenerative condition. Symptoms include disturbances with movement, mood and cognitive function, which in the majority of cases appear in people between 30 and 50 years of age.

According to the HD Association of Ireland, there are 700 people with the disease in Ireland and a further 3000 at risk.

One of those who knows what it is like to care for someone with the disease is Pauline Doran whose 48-year-old son Joe has been living with HD.

Travelling over to Rome tomorrow will be a special occassion for the Longford family and Pauline says that they have nothing to hide and will be proud to be among the families who will be in attendance.

Speaking to TheJournal.ie, Doran described how her son’s life changed following the diagnosis.

“It’ll be a once in a lifetime moment. If it helps bring awareness then that can only be a good thing. I think there are more people out there who understand it a little bit better but there is still a lack of awareness. When you say Huntington’s Disease, people will nod at you, alright. They’ve heard of it before but don’t really know what it is.”

Her son faces a number of challenges every day but the public’s ignorance to the condition can also be difficult to deal with.

“It’s not contagious. It robs people of the basics of life.

If you saw him working down the road, you’d think ‘look at that layabout walking around drunk in the day’.

“Just going out having a cup of tea without someone looking at you, most of us take that for granted. That’s not the case for people with the disease.”

A spokeswoman for the HD Association of Ireland said tomorrow’s visit to Rome is so important for the recognition of the illness on a world stage.

She said: “Yes, it’s at the Vatican with Pope Francis, but this is not just a religious story, it’s a human one. Pope Francis is the biggest voice to speak for families across the world dealing with this condition and mostly too scared to go public because of being treated differently, being denied mortgages and insurance for example.

“It can be difficult in the third world because they’re often viewed as ‘cursed’.

“Additionally, the content of Pope Francis’ recent TED talk about engagement with science and technology along him speaking out the words and accepting these families goes some way to encouraging people to become involved in the research, which in turn, accelerates the path to treatments.”

You can find out more about Huntington’s Disease here.

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