Most children and adults with PWS can have the same health issues as the rest of the population, but there are some specific health risks and issues related to PWS of which parents and health professionals need to be aware.
The following links are sections from the PWS Journey. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PWSA UK
Growth Hormone Therapy
The use of growth hormone treatment (GHT) for children with PWS was approved in Europe in 2001. There have now been many research trials, mostly done on a small scale, which show clear benefits for children with PWS, including increased height, improved muscle strength and improved respiratory functions. It is not currently licensed in the UK for adults with PWS, although a few individuals may receive it.
Others sources of information about general health care
PWS tips for Medical Professionals
Information for Emergency Departments and Hospital Staff
NHS Choices – Prader Willi Syndrome
PWS Medical Alert in several languages –International PWS Organisation
The Basics of a Healthy Adult Lifestyle – Famcare, International PWS Organisation
Good Health Checklist for Adults with Prader-Willi Syndrome – Famcare, International PWS Organisation
PWS Medical Alert Card
The PWS Medical Alert Card is a wallet sized card which can be used to quickly inform medical staff, particularly in emergencies, that there are PWS specific health issues and risks which they need to be aware of.
You can download it here
If you would like a hard copy, please contact us
The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.
Sticky saliva is a common problem in PWS. This means that substances tend to stay in the mouth for longer and teeth are less protected from dental erosion and decay. Many people with PWS also have a high palate and sometimes a narrow upper airway, causing overcrowding of teeth in the mouth. Dental care is therefore very important.
Birth to 2 years 2 – 5 years 5 – 10 years 10 – 13 years 13 – 18 years
There may be a few problems with vision in PWS, most of which can usually be corrected relatively easily (including squint (strabismus) in young children). However, because eyes and vision appear to change through all stages of life, regular eye examinations are recommended.
Speech and language
There are various speech and language disorders which may occur in PWS, due to learning disabilities, physiological characteristics and low muscle tone. Most can be improved with appropriate speech and language therapy.
Birth to 2 years 2 – 5 years 5 - 13 years 13 – 18 years 18 – 25 years
If you have a question about health care which is not answered in the links above, please contact us.