ENNISKILLEN Castle was illuminated in colour on the evening of Saturday, May 15, along with 15 other sites across Northern Ireland, to “shine a light” on Huntington’s Disease (HD) for HD Awareness Month and to highlight Huntington’s Disease Association Northern Ireland’s (HDANI) Family Matters campaign.

Enniskillen man Brian Fee, who was diagnosed with Huntington’s Disease in 2016, attended the castle light-up, along with his supportive wife, Maggie.

Brian and Maggie’s poignant insight into their day-to-day lives with the devastating disease was reported on in this paper recently, in our May 6 issue, with the couple attending the light-up to try to help raise awareness.

Rare disorder

Huntington’s Disease is a rare and hereditary disorder of the brain which causes people to deteriorate physically, cognitively and mentally, yet there is little awareness of the condition and its impact on families.

The Family Matters survey, also launched on May 1 by the Huntington’s Disease Alliance, revealed that 100 per cent of those with the disease found that most people they told about the condition didn’t know what it was.

Additionally, more than two-thirds (69 per cent) of Northern Irish carers suspect that their loved one has been wrongly accused of being drunk or on drugs due to displaying symptoms of Huntington’s.

Sorcha McPhillips, Chief Executive, HDANI, and one of the members of The Huntington’s Disease Alliance UK and Ireland, said: “HDANI is proud to take part in the Family Matters campaign to help shine a light on the experiences of people living with Huntington’s Disease in Northern Ireland, where people continue to be denied equal access to the essential services necessary to help patients and their families.

“The disease is a devastating not only for those living with the disease but for everyone around them.

“It is vital that we raise awareness so that we can improve equitable access to specialist support services for the many families that cannot access specialist care.”

The Family Matters campaign also invites those who have experience of Huntington’s to contribute pictures, words and thoughts to a shared digital community space, entiled ‘the Living History Project’.

Four poignant short films sharing the stories of families living with Huntington’s will also be included on the Family Matters website to raise awareness of the disease.

For further information on the Family Matters campaign, check out www.hdfamilymatters.com.