FAQs

I think that I, my child, or someone I know, has PWS. What should I do?
PWS is a rare disorder, and not everyone with an over-eating problem will have PWS. Read the page on What is Prader-Willi Syndrome? carefully. If you can check most of the symptons mentioned there, it may well be that you, your child, or someone you know, has PWS. If not, there are other organisations, who may be able to help.

Our sister organisation, PWSA (USA) has published a checklist of diagnostic criteria which could help you decide whether or not the person has PWS.

If you still think PWS is possible, go to your doctor and ask for a referral for genetic testing. Take information from this site with you.

Are there any local support groups?
Support groups operate in various parts of the country. Please contact us to see if there are any near you.

Does everyone with PWS have a learning disability?
To some extent it depends what is meant by "learning disability". About 10-20% of people with PWS have a measured IQ over 70 (below which, the category "learning disability" applies); a few have IQ in the 90s-100. Thus, intellectually, some do not have a learning disability.

However, because everyone with PWS has a varying degree of immature social and emotional development, they find it difficult to use their knowledge appropriately in social situations, and are thus disadvantaged in much the same way as those with learning disabilities.