‘Greater care needed’ for sufferers of rare genetic disorder

Study shines light on lack of supports for people with Prader-Willi syndrome

 

Greater mental health supports and more respite care are needed for people with the rare condition Prader-Willi syndrome (PWS), according to a new report.

About 100 people in Ireland have the condition, and four to five babies are diagnosed with it each year.

PWS is a genetic disorder that causes chronic hunger feelings leading to excessive overeating and consequent obesity. It may also lead to low muscle tone, restricted growth, learning difficulties and problem behaviours. There is no cure for the disorder.

A study of 61 people with the condition found a lack of services is putting patients under severe strain.

Just one of the adults studied is in paid employment while 30 per cent of teenage children with PWS are in a mainstream school.

Sixty per cent of the adult patients had been diagnosed with a mental health difficulty, while common physical ailments reported by children included scoliosis, sight problems and sleep disorders.

The report by Prof Louise Gallagher of the school of psychiatry in Trinity College Dublin says there is an urgent need to set up mental health teams for child and adult sufferers, as well as the provision of respite care specific to the needs of PWS.

Jackie McHugh, parent of four-year old Fianna who has PWS, said living with the condition can be a big strain on her family, as Fianna needs constant care and attention.

“Simply going on a family outing requires a huge amount of organisation, and it’s likely that Fianna will need assistance for the rest of her life,” she said.