PWS Awareness Month May 2019

What is PWS? PWS is short for Prader-Willi Syndrome and it is a syndrome that some people are born with If you have a syndrome, it means you show signs that something is different or special about you Not many people have PWS so not many people know much about it

What does it feel like to have PWS? You’ll feel very, very hungry all the time, no matter how much you eat You need less food than other children of the same age You put on weight very easily, which might mean you get very ill and have serious health problems when you are older. This means you can’t have foods that are high in sugar or fat You’ll need other people to help you to make sure you don’t have too much food or foods that aren’t good for you

What does it feel like to have PWS? Your muscles have to work harder to move which can make things like walking, running or writing difficult You might feel very upset when things are different to what you expect so find it hard to control your behaviour Your brain works in a different way which can make learning difficult Making friends can be difficult because you find it hard to understand what people mean and how to play with other children

Close your eyes … Imagine you’re very very hungry and the person next to you is eating your favourite chocolate bar. You ask them to share it with you but they say you’re not allowed any How would you feel? Ask the children to feedback with some key words that describe how they would feel.

Can people with PWS ever get better? People with PWS will have it for their whole life Some people with PWS take medicines or have treatments to help them There is no ‘cure’ for PWS and no one has found a medicine yet that stops people with PWS feeling hungry all the time, but… Scientists are doing lots of research to find out exactly what causes PWS, and we hope that one day soon…

…we will find a cure!

How can you help? If you have a friend with PWS … Try not to eat sweets, crisps or chocolate when you’re with them Make an effort to include them at playtime and in conversations– they might want to join in but don’t know how! Be persistent and patient – your friend might take a long time to answer but it doesn’t mean they aren’t interested in what you’re saying

How else can you help? Raise Money for PWS! Could you give up sweets, chocolate, crisps and fizzy drinks for a whole week? Ask your family and friends to sponsor you to give up treats for a week. The money you raise will help people with PWS get the support they need and fund research that might one day find a cure for PWS.

Will you take our ‘No treats for a week’ challenge?