Even worse, she says, is the skin picking.
Andy has had an infected, open wound on his thigh for years that won’t
heal and he can’t leave alone; what began as a mosquito bite is now 5
inches long and 1½ inches wide. The obsessive tendency is enabled by
his high pain tolerance.
“It almost drives us more crazy than the food,” she says of the
constant picking that leaves blood on clothes and sheets. “You can’t
lock his leg, you can’t lock his hands.”
Like other PWS families, the Umbaughs store food behind lock and key,
count calories and find other ways to allow control. Every day, for
instance, Andy devises his own menu for the next day.
PWS sufferers usually eat separately — it’s too stressful for everyone
involved in a family meal — and holiday celebrations with extended
family and too many food temptations have to be restructured to avoid
resentment and conflict.
And like other families, the Umbaughs skip out on many activities at
their church, Nappanee Missionary, because of the pervasiveness of
“To keep Greg safe and on an even emotional keel,” Debbie says of her