Prader-Willi Syndrome

Florida's Voice

Prader-Willi Syndrome link to resources page (PWS) is an inherited condition typified by neonatal hypotonia with failure to thrive, hyperphagla or an excessive drive to eat which leads to obesity. It is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity. It affects people of all races, male and female.

According to http://www.pwsausa.org, although PWS is considered a "rare" disorder, it is one of the most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified.

Signs of PWS usually show between the ages of 18 to 36 months. Children with Prader-Willi Syndrome are often very affectionate and loving. Mentally, people affected by the disorder have lower IQs, commonly around 70.

There is no medical prevention or cure, but early diagnosis of Prader-Willi Syndrome gives parents time to learn about and prepare for the challenges that lie ahead and to establish family routines that will support their child's diet and behavior needs from the start. Knowing the cause of their child’s developmental delays can facilitate a family's access to important early intervention services and may help program staff identify areas of specific need or risk. Additionally, a diagnosis of PWS opens the doors to a network of information and support from professionals and other families who are dealing with the syndrome.

There is hope; there are those who listen and understand; and there are choices for those affected by developmental disabilities. FVDD can help by offering the research, resources, and support so that families and individuals can make informed choices. We advocate for dignity and choice for people with Prader-Willi Syndrome. You are not alone.  Contact Us for information or guidance.

“The gift of life and love comes in many different packages, but it is still a gift.”

Tyrone’s Story

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    Tyrone was the proud papa of Nate, a cheery, affectionate, and happy 2-year-old. Tyrone loved nothing more than to receive the plentiful hugs and kisses from his son.

    Nate looked like a little football player; in fact, people at the park would often joke that he might someday be a lineman. And Tyrone would smile as he envisioned his son’s athletic future, following in his dad’s footsteps.

    Tyrone and his wife thought Nate was as cute as could be, but they also knew that the pediatrician wanted them to stay on top of Nate’s diet as he was heavier than most of the kids in his age group.

    Tyrone and his wife started feeling as if “something was a little off” with their son around kindergarten, when he was substantially heavier than his classmates and showed developmental problems. He lagged behind in many of the so-called “benchmarks” of where he should be intellectually – nothing too obvious, but still, he was slower than his peers.

    Tyrone wondered what was going on and decided to take action. A few months later, Nate was diagnosed with Prader-Willi syndrome.