Messages By: tonygp20

 Hello from Alberta, Canada.  I'm 23 years old, and my 19 year old sister has PWS.  I recognize her symptoms in some of your posts; temper tantrums, inappropriate behaviour, mental disabilites, and insatiable hunger.  I have two other siblings, a sister who is 21, and a brother who is 16.  We've grown up with a locked fridge and pantry, and we know what its like to have others stare at you when your sister is behaving innapropriately in a public place.  Keeping this in mind, we love and treasure our sister.  Taking care of a child with this condition takes incredible amounts of effort and devotion.  We have had home-aids in the house on a regular basis working with my sister to help her, and to give my parents a much needed break.  My mother has gone through countless hours of meetings with government agencies to get my sister all the help she needs, financial and otherwise.  My father has served as president of the Prader Willi Syndrome Association of Alberta.  In the event that my sister outlives my parents, my sister and I will become her guardians.  Now that she's an adult, she lives in a group home with two other handicapped girls, with round-the-clock supervision.  Even with her mental disabilities, my sister has an incredible memory for dates, she can tell you if a certain day will be a Monday, Tuesday, or Wednesday, several weeks into the future.  When it comes to deciding the proper method of dealing with behavioural issues relating to PWS, it is very difficult.  There is very little reasoning with people with PWS, when my sister sets her mind on something, its very hard to change it.  All the yelling in the world doesn't help.  Sometimes you just have to ride out the temper tantrums, use time outs, etc.  Hitting doesn't help, because they will probably just scream louder.  There are several organizations out there that can help, there are several Prader Willi Syndrome Associations accross Canada and the United States.  It is always interesting to hear stories of other's dealings with PWS.  I will be watching Thursday's show with great interest.  My parents have always figured that there must be some reason that God brought such a special person into our family.