Tuesday, June 17, 2014

"Just Google it!"

In the distant past (ie pre internet days) very little was known about PWS, only that it was an 'eating disorder' and that a person who had it, would not live long and die from obesity-related illnesses.  (Life expectancy today is normal, providing good health management is undertaken.)  Information was hard to come by and was mostly written up as medical research. 

It is staggering how much information is now "out there" on the net - you only have to google "Prader-Willi Syndrome" to have over 872,000 results at your fingertips.  Not all information can be helpful, however, and some is not very accurate.  However, there are some first-class resources you can tap into, in many different languages.  Our own IPWSO site endeavours to keep abreast of the information, but it is useful to know what's on other sites as well.  The PWSA (UK) has just updated 13 of their booklets including:
  • Characteristics of PWS
  • Diagnosis
  • Genetics of PWS
  • Endocrine Disorders in PWS
  • Growth Hormone for Children (UK Practice)
  • Health Care in PWS
  • Vision and Care of the Eyes
  • Weight Management in PWS
  • Behaviour Management in PWS
  • Educating the Child with PWS
  • Speech and Language in PWS
  • Ethical & Legal Issues
All of these can be found on their website 

Research on PWS has escalated hugely over the years - whereas once research concentrated mainly on genetics and then on growth hormone treatment, now all areas of PWS are being researched and results are coming through all the time.  A foundation for research (FPWR - Canada) was established in 2003 and has already committed over $3,000,000 in research grants.  The FPWR's generosity in grants for research is well-known and results are regularly written up on their research blog.

Further research from the American PWSA on medical topics and the latest 'red alerts' such as the vitally important signals for gastroparesis or slow emptying of the stomach which can cause severe constipation and complications.  This is also on our IPWSO website, along with a list of other research topics.

On-line Parent Support Groups: Just go to https://groups.google.com and google 'health' and then Prader-Willi Syndrome to find pages of support groups all over the world dedicated to discussing the syndrome and supporting families.  Just to know you are not alone, can be strength enough in the hard times to carry on.

Thank goodness for the internet!

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