The PKU Association of Ireland is asking people with the condition to go online an answer a short survey as part of efforts to get better treatment options in Ireland.
One in every 4,500 children in Ireland are born with the condition and Ireland has the highest prevalence of the metabolic disorder which requires sufferers to adhere to a strict low-protein diet in order to avoid irreversible mental and physical disabilities.
The survey can be accessed by visting the PKU website at www.pku.ie and will be available until the 6th of December.
Anne Norris spoke to Bernadette Gilroy who is Chairperson of the PKU Association, and to Ballinasloe native David Maguire about living with the condition and the toll it can take .
Bernadette Gilroy has said the Irish PKU community are incredibly lucky to get the most phenomenal support from the hardworking metabolic teams at bothTemple Street Childrens Hospital and the Mater Adult Metabolic Unit, and they are forever grateful to their dedication and commitment in ensuring the best possible outcomes for those affected by PKU in Ireland.
