Ondine’s curse gives little away about the extremely rare medical condition it describes. Nor does its formal name of congenital central hypoventilation syndrome, or CCHS.
But the reality is that CCHS is a lifelong and life-threatening disorder that means when the person affected falls asleep, they stop breathing, due to a malfunction of the central nervous system.
“Curse” might sound an accurate description but at 18, Elaine Foster* – one of only around 70 people in the UK with the condition – leads a life very much like that of any other teenager.
She goes to college, has set her sights on a career in animal care, spends time with her group of close friends and enjoys the occasional Saturday night out. The difference is that when she goes to bed, she must be ventilated, with a carer on hand and alert throughout the night in case of any problems.
Until the summer of 2014, Elaine was supported by the NHS but once she turned 18, the responsibility switched to her local authority’s adult services department, with her night-time support provided on their behalf by Almond Care.
Her mum Cathy* is very happy with the transition and Almond Care’s support since then, describing the service as “absolutely brilliant”.
In fact, the system is working so well that Cathy has very little contact with the carers. They arrive at 10pm, monitor Elaine’s positive pressure ventilation throughout the night, then alert Cathy and her husband when they go off duty at 8am the next morning.
Cathy appreciates the way that Almond Care director Julia Senah managed the taking over of Elaine’s care, including meeting several times with the family ahead of putting Elaine’s package in place, and the way that she is always available by phone.
She adds: “It has been a very smooth transition and Elaine is more than happy with her carers. Long may it continue.”
* Names have been changed at the family’s request.