Health Check: Prader-Willi Syndrome

Описание: A trip to the gym is one way to maintain your overall health. But for a group of women at the Life Time Fitness in New Hope, there are more factors at play than simply trying to burn a few calories.

"With Prader-Willi, you want to eat and eat and eat and eat, and we could absolutely kill ourselves," said Lenore Johnson.

Johnson, 49, has Prader-Willi Syndrome, a genetic disorder that results in uncontrollable hunger, stunted growth and intellectual disabilities.

"When I was in other homes, I had depression and [thoughts of] suicide, and that I think a lot had to do with my Prader-Willi," Johnson said.

Today, she and several other women live in a New Hope group home. It's one of seven such homes in the metro where direct care supervisors help them manage the syndrome with a diet and exercise plan.

"They all have some desired weight range that we all determine and agree on as a team," said Jackie Buechner, a program director from AME Community Services. "That's their goal that they're working toward, or that they are working on maintaining in that weight range."

Staff members help them stay on their path to success through a rewards program, and by incorporating exercise into their every day lives, both at home and at the gym.

"It's been really awesome to see the progress that they've made," Buechner said.

Case in point, Johnson says she once weighed 228 pounds. Now, she's at 110, and works hard to maintain that.

"It makes me feel good because I know that I'm making myself feel good, and I know that I'm keeping my weight in my weight range," she said.

She and the other women are able to keep that weight off, thanks to the help and guidance of others.

But if there's one thing Johnson would want people to know about Prader-Willi sufferers, it would be this:

"I think a lot of people make fun of people if they're overweight," Johnson said. "I don't think you should be made fun of, because it's not fair. People can't help it if they have a syndrome or if people are overeating, they don't know."

Experts say that most people with Prader-Willi Syndrome will need specialized care and supervision throughout their lives.

Delane Cleveland
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