IPWSO is exited to tell you about a new venture it is undertaking. Called "FamCare", it is designed to find ways of supporting families around the world who are caring for their adult child with PWS at home. We know that there are many of you doing this and looking for answers to questions, or just for someone else to say, "we know what you're going through".
Georgina Loughnan, from Sydney, Australia, who is an IPWSO Board member, is heading up this new project. She has worked over the past 21 years as a clinician with adults and adolescents with PWS. She has seen families continually work hard to provide and access the best care possible for their adult children with PWS, and recognises the difficulty that this can pose. She says:
"As children develop into adolescents and adults, families continue to struggle to find the most appropriate setting for them. It is these areas that need to be addressed as soon as possible for the adult child with PWS, to ensure that every environment they spent time in is as appropriate to the needs of someone with PWS as possible.
"Finding a school that will step up to the challenges demanded by someone with PWS is a difficult task. The school years can be most rewarding and above all, secure for a child with PWS if the service providers fully understand the syndrome and the specific needs it brings. On leaving school, the adult child with PWS faces a whole new lifestyle, one that inevitably offers many opportunities for great independence and high hopes. However, people with PWS can never survive well with independence, especially in travel or situations that provide even the hint of access to food.
"All environments into which adults with PWS venture need to be appropriately managed to prevent the development of overweight and difficult behaviour. Where an adult child with PWS remains living at home with the family, it will always be up to the family members and any other people supporting the adult with PWS to make provisions for the best possible environment."
FamCare's aim is to support families who need help, inspiration, new ideas, and just plain common-sense answers to the every-day problems that arise in caring for and managing the situations that arise when living with an adult with PWS at home.
Watch this space... there will be more!