WHAT IS PRADER-WILLI SYNDROME?
Prader-Willi Syndrome (PWS) affects one in every 16,000 people that are born. So you are very special!
PWS occurs when the chromosomes are mixing to form an embryo, one of the chromosomes, (chromosome 15) becomes damaged, and an important piece of genetic information becomes "switched off" or is missing.
No one is to blame for this, it is an accident and there is nothing you or anyone else has done to make it happen.
It does not affect everyone in the same way, but people with PWS do share some similar characteristics, like: -
LOW MUSCLE TONE
(this means you may not be able to run and jump as you would like )
PUT ON WEIGHT EASILY
GET UPSET EASILY
LIKE TO KEEP TO A ROUTINE
SHORTER THAN OTHERS YOUR AGE
FIND IT DIFFICULT TO READ
FIND IT DIFFICULT TO WRITE
FIND NUMBERS DIFFICULT TO UNDERSTAND
GET TIRED EASILY
TAKE THINGS THAT DON’T BELONG TO YOU, SUCH AS FOOD
THE PRADER-WILLI SYNDROME ASSOCIATION (UK)
The PWSA (UK) is the only organisation in the British isles which helps and supports people with PWS, their families and carers, and the professionals who work with them.
The Association has a wide range of literature about PWS, and specially made videos which tell people about the syndrome and features people with PWS talking about what it is like to live with it.
I am the Outreach and Development Worker for people with PWS. I work for the Association. My aim is to support people with PWS to take greater control of their lives and have a voice within the Association as well as providing the following services;
Annual Conference (Saturday Alternative) a full programme of events for people with PWS
Local Group Meetings
Special Holidays (BREAK)