Monday, 30 September 2024

June 17 event to raise awareness of Prader-Willi syndrome

NORTHERN CALIFORNIA – A 6-year-old boy with Prader-Willi syndrome is preparing to go to class but is becoming wildly upset because there’s a slight change in his schedule.

Police are helping search for a 27-year-old year old man with PWS who slipped away from his group home in the middle of the night in search of food.

Prader-Willi syndrome, or PWS, causes an insatiable drive to eat that is not satisfied no matter how much food is eaten.

PWS is the most common genetic cause of obesity, affecting about 2,500 people in California.

In infancy PWS causes weak muscles, impairs growth and interferes with overall development.

After age 2, severe behavioral symptoms similar to those seen in people with autism begin, along with PWS’ hallmark symptom, a life-threatening insatiable appetite.

Unmanaged, PWS causes morbid obesity and premature death.

PWS is not an eating disorder; it results from missing genes. No known medication controls or even reduces the drive to eat.

People with PWS cannot live independently because without 24/7 supervision for the entirety of their lives they will die prematurely as a result of choking, stomach rupture, or from complications caused by morbid obesity or their often impulsive behavior.

While parents of someone with PWS experience some of the highest levels of stress, today there is hope. With an accurate diagnosis and appropriate supervised care, people with PWS can live healthier and happier lives.

To raise awareness of PWS, the Prader-Willi California Foundation will hold its 17th Walking for Prader-Willi Syndrome event on June 17 in San Francisco at Crissy Field West Bluff Picnic Area.

Registration begins at 10:30 a.m., the walk starts at 11 a.m. and the fun lasts until 2 p.m.

The public is invited to pack a picnic lunch and enjoy the music, face painting and fun.

Those who want to participate can walk in person or support the effort online.

The Prader-Willi California Foundation is the only organization in California dedicated solely to providing education, support and advocacy services to Californians with PWS, their families, and professionals.

For more information visit www.PWCF.org or call the PWCF office at 310-372-5053.

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