On Monday May 15th Northern Ireland will take part in a global effort to shine a light on a cruel, rare disease which affects hundreds of families across the province.
Huntington’s Disease, is a neuro degenerative condition that affects men and women with symptoms most commonly appearing between the age of 30 and 50. Although no two people will share the exact same experience, typically people will gradually loose the ability to control their thoughts, feelings, movement, speech and swallow. Most people will have characteristic involuntary movements known as chorea. Balance and speech can be severely affected which can give the appearance of being drunk.
While many clinical trials are underway there is currently no cure and people will usually only live for between 5 and 20 years once symptoms start eventually requiring 24 hour care. The cruellest element of all is that every child born to a parent with the faulty HD gene has a 50% chance of inheriting the disease.
Ashley Clarke, 24, from Armagh has helped care for her Dad Des since he was diagnosed ten years ago and knows first-hand how the lack of understanding and judgment that can cause sufferers and their families to hide the disease or become socially isolated.
“My brother and I had my Dad at an event one day during the summer in his wheelchair and this woman came over and said it was a disgrace that he was drunk at noon. I was so angry and upset. I don’t want to stop Dad going out but it can be really difficult and I can understand why some people are too embarrassed or worried about people looking at them”.
#LightItUp4HD is a global campaign which aims to raise awareness and increase understanding of Huntingtons Disease and the effort to find a cure. Crumlin Road Gaol is among a dozen buildings across Northern Ireland that will join global landmarks like Niagara Falls and Barcelona’s Grand Plaza, to illuminate in the international HD colours of purple and blue to show support for families affected by the condition.
Phelim Devlin, Director at Crumlin Road Gaol said “We are very happy to play a part in raising awareness of this rare disease and to show those families living locally that we care enough to want to learn more about Huntingtons Disease and help HDANI continue to support them”.
HDANI, the only charity in Northern Ireland working with families impacted by Huntingtons Disease provides a range of information, advice and support services across the province although it’s really struggling to make ends meet given the current funding crisis in the charity sector.
Sorcha McGuinness, Chief Executive of HDANI urged the public to get involved in tackling the stigma faced by families. “We are delighted and grateful that Crumlin Road Gaol is taking part. This campaign provides a simple but powerful way for people to show solidarity and support to those living with this cruel disease. You can get involved by taking a selfie at any of the venues and sharing it on social media using the #LightItUp4HD or visit our website hdani.org.uk for other simple actions to help raise awareness”.