If your child has PWS

If your child has PWS, the PWSA (UK) can help you in many ways - providing support and information, putting you in touch with other parents and keeping you up to date with latest research developments. You need never face the future alone: there is always somebody who can listen, who can share both your success and your anxieties.

By registering for access to other site levels (simple, fast and free), you will be able to find out more about PWS and how to manage it as positively as possible.

If you want to join our discussion forums, and you are in the UK you will need to complete a PWSA (UK) membership form. This will also qualify you to receive our quarterly News magazine.

People outside the UK are also welcome to join our forums, though not normally as members of the PWSA (UK). However, we will need full address details to prevent bogus applications. See our Terms and Condition for how we will keep this information confidential.

If your child has just been diagnosed ....
This must have come as a shock and you are probably wondering just how this will affect you and your family.

Other cases
It is important to say immediately that your child is not alone. It has been estimated that 1:22,000 babies are born with PWS - that's one child with PWS born about every two weeks in the UK.

How did it happen and could it have been prevented?
Research shows that information from a vital part of chromosome 15 was missing or not “switched on “ at the time of conception.  There are several reasons why this might have happened but it is important for you to know that no one was to blame. Nothing you or your partner could have done would have prevented this irregularity which appears to be an accidental occurrence.  It is usually a “one-off” event and not hereditary in the usual sense and is thus unlikely to recur in the same family. Your consultant will be able to tell you if you are one of the few families where there is a risk of having another child with PWS.

How will our child be affected?
You may have been given a list of symptoms and effects.  Some of these are, quite frankly, disturbing and depressing.  It is important to remember that not all affected people experience all of these and certainly not all at the same time in their lives.

The degree to which the obsessive appetite occurs can vary widely from one person to another.  Early advice on dietary control can be very effective in helping this problem.

What can we do?
As with rearing any other child, it is best if life is taken one day at a time.  Your doctor and health visitor are there to advise and support you, and so are we.

The Future
There will be times when you will be delighted with your child’s progress but also times when things are difficult, when people do not listen or if they listen, do not understand.  Times when you may want to give up.  We are there to share them, to help you then and always.

With our help many families have the comfort, care and consideration which they need.  As parents of children with the syndrome we have experience and understanding of many of the challenges you will face.  We know that determination pays and we are there to demonstrate it and stand by you.

With our help Prader-Willi Syndrome can be managed, and your child helped to reach his or her full potential. 

You may also find the following pages on this website useful:

About us More about the help we can offer parents

For Parents Special pages for parents of children and adults with PWS