The Minister of State for Disability at the Department of Health has acknowledged the devastating impact which Huntington’s Disease has on the entire family.

Galway East TD Anne Rabbitte met with families affected by the disease at the Huntington’s Disease Association of Ireland annual meeting in Ballinasloe.

The Minister spoke positively about her intention to ensure families affected by HD will have access to necessary services and that family carers, who often care for several family members, have assistance.

She acknowledged the vital need for HD specialist support in the community to overcome the misunderstanding and stigma associated with the disease over generations.

The Minister also confirmed her priority to fully resource at least four of the seven required community neuro-rehabilitation teams around the country.

A member of a family affected by HD in County Galway said: “It is very encouraging to have Minister Rabbitte speak at our meeting to acknowledge the huge struggles families face.

“Huntington’s Disease desperately needs more recognition, more specialist support and more awareness from healthcare professionals; policy makers; and the general public.

“As children we grew up watching our Dad help care for Mum and just a few years later he had to start over with my older brother.

“Now my sister has symptoms and it is an ongoing struggle to get her the care and support she needs. HD families can overcome the fear and stigma associated with this disease if we know there are sufficient resources to ensure health and social care professionals can understand and help,” he said.

Huntington’s Disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in the majority of cases appear in mid-adult life.

Approximately 1,000 people in Ireland live with symptoms of HD or with the altered gene that triggers the disease. There are more than 3,000 people nationwide who are living at risk of developing the disease and hundreds of family carers left to struggle without adequate supports.

Despite the impact on families, from one generation to the next, there is little awareness of the condition and very limited specialist services. Unlike most other European countries, Ireland has no specialist multidisciplinary services or HD specialist nurses. By comparison, Scotland, with a similar-sized population have 10 regional multidisciplinary clinics with a team of 19 HD specialists offering outreach support throughout the country.