A Huntington's Disease Awareness Walk to be held in Lough Key on Saturday July, 15.
Joe Doran, a HD advocate who recently met Pope Francis will lead the walk
Huntington’s Disease is a devastating hereditary degenerative condition.
Symptoms which include uncontrollable jerking movements, slurred speech and progressive cognitive and emotional impairment, usually present between the ages of 30 and 50 years.
Symptoms gradually worsen over the 10‐25 year course of the disease. Eventually, people with HD will be completely dependent on others.
It affects more than 750 people in ROI with over 3000 at risk.
Each child who has a parent with HD has a 50% risk of inheriting the faulty gene that causes the disease.
HD families face discrimination with mortgages, insurance and employment – People will be asked about their family history and are weighted for insurance cover even when they don’t have the faulty gene.
Many are afraid to disclose to their employers that they are from a HD family in case they will be passed over for promotion.
In the past people with HD were often misdiagnosed with Alzheimer Disease or Parkinsons so people were not aware of the condition in their family.
It is hoped that greater awareness will decrease stigma surrounding the disease and encourage families impacted to seek support.
Ireland lags behind most European countries with regard to HD research and specialist services. Dedicated clinics and specialist services are critical to pursue research and improve standards of care.
The Huntington’s Disease Association of Ireland helps families living with HD through the provision of counselling, support and information.