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Government pledges specialist support as over 700 people in Ireland battle Huntington's Disease

Another 400 know they have the gene that causes the condition 


Disability Minister Anne Rabbitte

Disability Minister Anne Rabbitte

Disability Minister Anne Rabbitte

IRISH families affected by one of the world's cruellest illnesses, Huntington's Disease, have been assured they will receive the diagnostic and care support required.

Disability Minister Anne Rabbitte acknowledged to the Huntington's Disease Association (HDA) that specialist support is required within the community for those who contract the genetic condition.

The minister - speaking at the HDA annual conference - said the Government will be taking steps to ensure HD patients and their families will receive the diagnostic, treatment, care and support they so desperately need.

As a key element of delivering on the Government's care promises, the department will fully resource four of the seven community neuro-rehabilitation teams identified by the HDA as critical for Irish healthcare needs.

People diagnosed with rare illnesses including Huntington's Disease can face a nightmare ordeal through the lack of specialist clinics in Ireland, and the inability of the healthcare system to offer personal treatment and care plans.

The Government was urged earlier this year by Irish and UK health campaigners to create a specialist national clinic for the care of people with HD.

One HD family member, Eoin, welcomed the commitment by Minister Rabbitte.

"It is very encouraging to have the minister speak at our meeting today 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."

Huntington's Disease (HD) is a rare genetic condition that slowly attacks the brain.

There are over 700 people in Ireland now battling this disease - and some 400 who know they have the gene that causes it and will become ill at some time.

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A further 3000 are living with a genetic risk.

Families of those affected warned it was a shocking indictment of Ireland that it is still without a specialist national clinic to help the most vulnerable people battling this rare disease.

HD patients have an average life expectancy of 10-25 years following diagnosis.

The illness slowly changes a person's motor functionality, cognitive ability and emotional well-being and it ultimately ends in death.

Many experience mental illness as a symptom.

But it is particularly cruel because it has a 50pc chance of being inherited by the patient's children.

HD is commonly referred to as one of the world's cruellest family diseases.

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