When doctors first were coming to grips with the syndrome defined by an unstoppable urge to eat, those whose chromosomes created that urge rarely lived long enough for others to worry about what would happen to them as adults.
With slow growth, low muscle tone, low metabolism and too many
calories, Prader-Willi syndrome sufferers became morbidly obese early
in life and usually succumbed to such complications as diabetes, sleep
apnea, heart and lung issues.
But now, says Dr. Bryan Hainline, a biochemical geneticist for Riley
Hospital for Children at Indiana University Health in Indianapolis,
many of these adults are living into their 50s and 60s.
And one of the first things he counsels parents of even young patients
is: Sign up now for services through Indiana’s disability waiver — a
list that extends years into the future.
Like other disabled residents, Prader-Willi patients are eligible for
Hainline points to “a desperate need” for psychiatry services
statewide, and particularly for children with autism and other
But with federal and state cutbacks for mental health, Hainline says
the lack of treatment options has become critical — and compounded by
fewer people entering such a frustrating field.