Suncoast organization helps those with genetic eating disorder

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Posted: Thursday, August 21, 2014 10:15 am

SARASOTA, Fla. – Prader-Willi syndrome is a serious, life-threatening medical condition and is the most common genetic cause of obesity. But there is so much more to the little known condition that starts at birth.

Imagine yourself feeling hungry 24 hours a day and never feeling full -- no matter how much you eat. This is the life of a person with Prader-Willi syndrome

“We had to go home and lock up all food; that was really hard on us to do that. But he thanked us because he said ‘I can't help it, Mom. My hand reached in the refrigerator and I can’t stop it,’” says Janalee Heineman.

Imagine locking your refrigerator and pantry to stop your child from eating themselves to death? “I've known children as young as three or four die of obesity-related complications.”

School age children with PWS have to be carefully watched by teachers. But unfortunately, says Ken Smith with the Sarasota-based Prader-Willi Syndrome Association, it goes further than that. “It's access to food, access to money to get food, access to other children to get food.”

Life expectancy for people with PWS has increased in recent years, but the need for monitoring still exists. “They can't live by themselves, because their drive need is too uncontrollable, and they always have to be in a supervised setting.”

Gastric bypass and bariatric surgery are not options. “In people who don't have the syndrome, we have an off signal that tells us when we're full, and gastric bypass reduces the volume of the stomach. But when you have an individual who has no off switch, it actually is a potentially dangerous intervention.”

Heinemann, Director of Research and Medical Affairs with PWSA, says right sided heart failure, respiratory problems, and diabetes are just a few complications resulting from dramatic obesity.

But the disorder that begins at birth doesn’t start with uncontrollable appetite. “Weak muscle tone in a baby, very floppy baby, difficulty sucking, failure to thrive.”

It's later that the often misdiagnosed displays classic symptoms. “At about age two to four is when that changes, and all of a sudden you get a child who is overly interested in food, and you suddenly can have an obese toddler on your hands.”

There's no law stopping discrimination of the obese, says Heinemann, and bullying is common. “It's very sad. Our children with the syndrome and adults with the syndrome struggle with that all the time.”

There are several new drugs on the horizon, including Zafgen, now starting its third phase, to reduce hunger and help with weight loss.

Pittsburg Pirates manager Clint Hurdle has a child with Prader-Willi syndrome and is the national spokesman.

For more information, check out the Prader-Willi Syndrome Association online or by calling 800-926-4797.

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