TORRANCE, CA (PRWEB) April 17, 2004
It is estimated that 18,000 to 23,000 people in the United States have Prader-Willi Syndrome (PWS), a non-inherited genetic disorder that causes people to become extraordinarily obese and die of obesity-related disorders if their entire environment is not managed twenty-four hours a day, every day, for the remainder of their lives.
Never heard of Prader-Willi Syndrome? Unfortunately, that?s not surprising, according to Prader-Willi California Foundation (PWCF), the non-profit organization based in Torrance that provides support and services to individuals with Prader-Willi syndrome and their families throughout the state of California. PWCF?s Executive Director Lisa Graziano says the syndrome is still unfamiliar to most health care professionals, including pediatricians, pediatric nurses, neurologists, and endocrinologists, even though it is the most common cause of genetic obesity and has been identified since 1956. Says Graziano, ?Unfortunately, we talk to families all too often who for years have watched helplessly while their child gains massive amounts of weight, who have gone to doctor after doctor looking for answers and help, and who only recently have been properly diagnosed. The guilt, stress, and misery these individuals and their families have endured is absolutely heartbreaking.? It is estimated that in the state of California somewhere between 2,200 to 2,800 people have Prder-Willi syndrome, but less than 500 have been identified. Graziano continues, ?We must increase awareness of this genetic disorder. Awareness saves lives.?
More Than Just Obesity
Because individuals with Prader-Willi Syndrome always feel hungry, they cannot live independently because if allowed, they would literally eat themselves into premature death. But Prader-Willi Syndrome is more than just morbid obesity. Its symptoms are myriad and seemingly endless. A failure of the hypothalamus appears to be at least partially responsible for creating weak muscle tone; cognitive impairment; slow metabolic rate; insatiable appetite (hyperphagia); high pain threshold; respiratory concerns; short stature; incomplete sexual development; body temperature abnormalities; diabetes; scoliosis; dental problems; problems with motor skills; speech problems; characteristic behavior problems such as temper tantrums, violent outbursts, obsessive-compulsive behavior, tendency to be argumentative, oppositional, rigid, stubborn, and perseverating; and the list goes on and on.
There is No Cure. But There Is Hope.
There is no cure for Prader-Willi Syndrome. No known medications can control the hyperphagia, and no medication can totally manage the characteristic mood swings and behavioral symptoms. But there have been some advances, such as growth hormone therapy which is helpful to improve muscle tone and short stature. Despite the fact that obesity and obesity-related illnesses, such as diabetes, have been identified as a national epidemic, very little research is under way on PWS, the number one cause of genetic obesity. More research dollars are needed to continue to develop the medications that will control the symptoms of hyperphagia and behavior problems so that individuals with PWS can live independent, productive lives.
Early identification and intervention can eliminate obesity and obesity-related illnesses. Early intervention helps families manage some of the behavioral and psychiatric symptoms. Awareness not only saves lives, it improves the quality of life of individuals with Prader-Willi Syndrome.
Prader-Willi Syndrome Awareness Week Events
Prader-Willi California Foundation will commemorate national Prader-Willi Syndrome Awareness Week by hosting two awareness and fundraising events, Walking for Prader-Willi Syndrome, on Sunday,
April 25 in Encino and on Saturday, May 1 in Berkeley. Funds raised at the events will benefit individuals with Prader-Willi Syndrome and their families by providing educational, support, and advocacy services, including supportive living and group home assistance.
About Prader-Wili California Foundation
Prader-Willi California Foundation (PWCF) is a 501 (c)(3) nonprofit organization founded in 1979 by families of children and adult children with Prader-Willi Syndrome. PWCF is the only state-wide advocacy organization dedicated to serving the needs of individuals with Prader-Willi Syndrome and their families. PWCF is an affiliate of Prader-Willi Syndrome Association, the national organization serving the needs of individuals with PWS and their families. PWCF?s members are volunteer family members, caregivers, and a handful of professionals who believe that through perseverance, hard work, and faith we can create miracles for our children. For more information about Prader-Willi Syndrome, the Walking for Prader-Willi Syndrome awareness events, and Prader-Willi California Foundation, visit http://www.pwcf.org or contact Lisa Graziano, Executive Director of Prader-Willi California Foundation at (800) 400-9994 (within California), (310) 316-3339, or email firstname.lastname@example.org.
Prader-Willi California Foundation
3655 Torrance Boulevard, Suite 360
Torrance, CA 90503
(800) 400-9994 (Within California)
(310) 316-3339 ? Fax: (310) 316-3730
http://www. pwcf.org ? email@example.com
Lisa Graziano, Executive Director