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.
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