One day to go til Siena’s PWS Walk 2011!!!!!
If you are registering for Siena’s PWS Walk online – please do so by 5pm Friday – otherwise you can register at the walk starting at 9am on Saturday! THANK YOU!!!!!!
Q: Does early diagnosis help?
A: While there is no medical prevention or cure, early diagnosis of Prader-Willi syndrome gives parents time to learn about and prepare for the challenges that lie ahead and to establish familyroutines 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.
Q: What does the future hold for people with PWS?
A: With help, people with PWS can expect to accomplish many of the things their “normal” peers do—complete school, achieve in their outside areas of interest, be successfully employed, even move away from their family home. They do, however, need a significant amount of support from their families and from school, work, and residential service providers to both achieve these goals and avoid obesity and the serious health consequences that accompany it. Even those with IQs in the normal range need lifelong diet supervision and protection from food availability. Although in the past many people with PWS died in adolescence or young adulthood, prevention of obesity can enable those with the syndrome to live a normal lifespan. New medications are already improving the quality of life for some people with PWS. Ongoing research offers the hope of new discoveries that will enable people affected by this unusual condition to live more independent lives.