University of Limerick hosts hundreds of delegates as conference on rare medical condition begins

Hundreds of delegates are expected at the University of Limerick as it hosts a major conference which aims to educate the public about a rare medical condition.

Prader-Willi Syndrome (PWS) is a rare genetic disorder that results in a range of physical, behavioural and mental health issues. Around 120 people in Ireland have been diagnosed with the condition.

Speaking ahead of the conference, which gets underway this Saturday, Anthony Carr, Chairperson of the Prader-Willi Syndrome Association of Ireland (PWSAI), said: “It is a huge honour for the to bring the eleventh international conference to Ireland and to the banks of the Shannon.”

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PWS, named after the Swiss doctors who first identified the condition, happens due to the absence of certain genes and is associated with learning difficulties, problem behaviours and a chronic feeling of hunger that leads to excessive eating and life-threatening obesity.

“People with Prader-Willi syndrome think about food all the time and live in a constant state of food-related anxiety. There is no cure or treatment for this brain disorder which prevents them from feeling full. It is a lifelong condition and people with Prader-Willi do not have the capacity to keep themselves safe, regardless of levels of intelligence or adaptive functioning,” Mr Carr said.

The syndrome can also lead to secondary health conditions such as scoliosis, seizures, gastrointestinal, skin problems and mental health issues including depression, anxiety and psychosis.

The syndrome is quite rare, with approximately five to six babies being diagnosed each year.

Babies with the syndrome are often described as ‘floppy’ due to their low muscle tone and initially this can result in feeding difficulties, a failure to thrive and impacted growth. 

While major motor milestones are delayed, they can be achieved with the support from various health professionals such as physiotherapists, occupational therapists and speech and language therapists. 

The four-day conference taking place in UL is the first to be held in Europe by the International Prader-Willi Syndrome Organisation (IPWSO) since 2013 and it is the first time it will be co-hosted by the PWSAI.

“With this conference, we look forward to creating better public awareness of the syndrome, how people living with it can be supported and to developing new and better standards of care,” Mr Carr stated.