Help at hand for young people affected by Huntington’s disease

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YOUNG people whose lives have been impacted by Huntington’s disease have been influencing the help and support available to others across Northern Ireland, following the launch of a new initiative in Belfast on December 6.

The Huntington’s Disease Association Northern Ireland’s Youth Organisation (HDANI-YO) mirrors international initiatives and gives young people access to support online and through local groups and networks.

HDANI-YO is now working with young people to make sure they get the help they need, as soon as they need it.

Huntington’s Disease is a neuro-degenerative genetic disorder which is caused by an expanded gene in a person’s DNA. It causes involuntary movements and can affect the way a person thinks or behaves. These symptoms can cause embarrassment for those with the disease and their families.

As it’s a genetic condition the disease can be especially difficult for young people to deal with - not only do they have to cope with the illness in a family member, they also have to deal with the knowledge that they are 50 per cent at risk of inheriting the disease.

There are currently around 200 people across Northern Ireland who have been diagnosed with the disease, although the actual number of sufferers could be much higher.

The Huntington’s Disease Association Northern Ireland has received grant funding to set up an initiative to explore the need and desire for a youth service by anyone impacted by the disease. Available to young people and families across Northern Ireland, it will explore ways of providing support to them as they try to cope with the effects of the disease.

The initiative will specifically focus on improving support and engagement available to young people, with the aim of reducing the unusually high levels of suicide and self-harm found in families impacted by Huntington’s disease. Studies show that working with young people soon after they first discover their lives are affected by HD can significantly reduce the number who go on to self-harm or commit suicide.

Michelle Tennyson from the Public Health Agency, which provided the funding for the project, said: “I really hope this initiative will help young people to find their own voice and take the opportunities that are on offer.”

The HDANI-YO initiative aims to provide young people with a safe and supportive environment so they can begin to share their experience and concerns and help remove some of the social stigma they feel.

Anyone who wants more information or support from HDANI should log on to, check out HDANI-YO on Facebook or, follow @HDNAI_YO on Twitter.