Bernadette Sheehan Gilroy, Munster Technological University, Kerry, Ireland, shares her thoughts on the key unmet need for psychological support in phenylketonuria (PKU) management. The oldest patients with PKU who have been on long term dietary support following the introduction of newborn screening in Ireland are approaching 58 years old. There is a lack of resources for adults with PKU, particularly in terms of psychological help to assist patients with dietary adherence. Ms Sheehan Gilroy also highlights the impact that factors like stress, illness, and menstruation can have on dietary management, and the fact that elevated phenylalanine levels negatively impact ability to plan and organize, which makes adherence to dietary requirements more difficult. Psychological help for parents of children with PKU is also needed to assist them to in coping with learning the diet, administering it to their young children, and varying protein requirements based on their child’s growth. This interview took place at the European Academy of Neurology (EAN) Annual Meeting 2024 in Helsinki, Finland.
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