Coping with a child or family member with Prader-Willi Syndrome can mean not only limiting food, but also fighting for support services, the Irish Times reports.
The rare genetic syndrome is caused by an alteration on chromosome 15 and is marked by chronic hunger, learning difficulties, low muscle tone, and, in adulthood, depression and anxiety, among other symptoms, it notes. The feeling of always being hungry also leads people with Prader-Willi to eat excessively and develop obesity and related problems, the Irish Times adds.
In Ireland, it notes that there are only about a hundred people living with Prader-Willi, but a survey of them and their families has aimed to better understand what support they need. "There is a significant emotional trauma, stress, and anxiety on parents if they aren't given services specifically geared towards PWS," Trinity College Dublin's Louise Gallagher tells the paper. "There is also an impact on siblings because parents have less time to be available to them."
According to Irish Times, the survey has found that most families with a child, teenager, or adult with the condition don't have access to services, and Prader-Willi Syndrome Association Ireland is now pushing for increased respite services, including a residential facility for adults with the condition.