Most children and adults with PWS have the same health issues as everyone else, but they can be more difficult to recognise. There are specific issues that are caused by the syndrome that parents and professionals need to be aware of.
The following links are sections from the PWS Journey - a guide for parents containing information to help them navigate their way through their child's journey from birth through adulthood. 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 Treatment
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.
General health care in PWS
Health Multi-Disciplinary Overview - Our health multi-disciplinary overview is a pathway for all professionals involved in the care of an individual with PWS. With a clear outline, and links to relevant documents on our websites, it details who should be involved when and covers from birth to adolescence. It is most effective used as an online tool as part of your son or daughter’s electric notes, and is available to all health professionals. The link can be passed to your son or daughter’s lead consultant, and a copy can be downloaded and printed for information purposes. With grateful thanks to Dr Anne Livesey, Consultant Community Paediatrician at Royal Alexandra Children’s Hospital, Brighton.
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
All About Me
'All About Me' is a resource that 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
If you have a question about health care which is not answered in the links above, please contact us.