Bridges4Kids Logo

 
Home ] What's New ] Contact Us ] About Us ] Links ] Search ] Glossaries ] Contact Legislators ] Reviews ] Downloads ] Disabilities ] IDEA ] Special Education ] Medicaid/SSI ] Childcare/Respite ] Wraparound ] Insurance ] PAC/SEAC ] Ed Reform ] Literacy ] Community Schools ] Children At-Risk ] Section 504 ] School Climate/Bullying ] Parenting/Adoption ] Home Schooling ] Community Living ] Health & Safety ] Summer Camp ] Kids & Teens ] College/Financial Aid ] Non-Public & Other Schools ] Legal Research ] Court Cases ] Juvenile Justice ] Advocacy ] Child Protective Services ] Statistics ] Legislation ] Ask the Attorney ]
 
 Where to find help for a child in Michigan, Anywhere in the U.S., or Canada
 
Bridges4Kids is now on Facebook. Follow us today!
 
Last Updated: 11/20/2017
 

 Article of Interest - Prader-Willi Syndrome

WA Rare syndrome has 3 victims, medical experts say
In cases of Prader-Willi syndrome, experts say there are really three victims: the child who must suffer through a lifetime of insatiable hunger, and the mother and father who must constantly deny food to their child so he doesn't die.
by Heath Foster, April 30, 2003, Seattle Post-Intelligencer
For more articles like this visit http://www.bridges4kids.org


In cases of Prader-Willi syndrome, experts say there are really three victims: the child who must suffer through a lifetime of insatiable hunger, and the mother and father who must constantly deny food to their child so he doesn't die.

Prader-Willi is a genetic birth defect that damages the functioning of the hypothalamus, the region of the brain that controls feelings of hunger and fullness. People with the syndrome never feel full and also have slower metabolisms than normal.

A life of constant dieting and locked refrigerators is only part of the syndrome. People born with it also typically experience mental retardation or learning disabilities, incomplete sexual development, disruptive behavioral problems and obsessive-compulsive tendencies. And they tend to be short, have higher percentages of body fat and low muscle tone.

An estimated one in 12,000 to 15,000 people in the United States suffers from the syndrome. That translates into about 21,360 nationally and 450 in Washington state.

Dr. Vanja Holm, a neuro-developmental pediatrician at the University of Washington, said that when the syndrome first began to be diagnosed in the 1970s, it was common for people with Prader-Willi to die young.

"It was sort of assumed they would die in their teens from obesity," she said. "But as we have learned it can be controlled, a lot of children have lived into adulthood, and even to their 40s and 50s."

Today, children diagnosed with syndrome early are given growth-hormone injections to increase their height and lower their body fat. Their leaner bodies in turn can lead to speedier metabolisms that allow them to eat more without gaining weight.

Depending on how controllable their behaviors are, some adults with Prader-Willi are able to graduate into independent living situations where caregivers help them with their meal preparation. But experts say most people with the disease do best living in group settings with others on similarly restrictive diets.

Although there is no cure for the syndrome, researchers believe it may hold a key to dealing with the nation's obesity epidemic.

The UW's Dr. David Cummings discovered in 2001 that people with Prader-Willi have much greater levels than normal of a hormone called ghrelin. When injected into humans, ghrelin intensely stimulates hunger. Now, major pharmaceutical companies are researching drugs that may be successful in treating obesity by blocking the hormone.

TO LEARN MORE

For more information about Prader-Willi syndrome, go to www.pwsausa.org.

The only agency in the state with specialized community-based programs for people with Prader-Willi syndrome is the non-profit Camelot Society in Shoreline, which can be reached at 206-364-6680. Such programs did not exist when Chad Phillips was first diagnosed with the disease in 1975.

P-I reporter Heath Foster can be reached at 206-448-8337 or heathfoster@seattlepi.com.

 

Thank you for visiting http://www.bridges4kids.org/.

 

bridges4kids does not necessarily agree with the content or subject matter of all articles nor do we endorse any specific argument.  Direct any comments on articles to deb@bridges4kids.org.

 

 

2002-2017 Bridges4Kids