Health

From birth through to adulthood, there can be a number of health professionals involved in the lives of those PWS and this can, at times, feel overwhelming.

Below is information to help you navigate the many different areas that health, including some that can be passed to professionals involved in your family member's care.

Dedicated PWS clinics

There are a number of NHS-run PWS clinics across the UK.

These are run by endocrinologists with a special interest in PWS and often attended by other clinicians and volunteers or staff members from the PWSA.

They can also be an opportunity to meet other families.

For more details about PWS clinics please get in touch.

• Vision and care of the eyes (PDF)

• Speech and language (PDF)

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.

PWSA UK - Growth hormone treatment for children with PWS (PDF)

• Information for hospital staff (PDF)
  
• Anaesthesia Recommendations in PWS - Orthanet (PDF)
• NHS Choices – Prader Willi Syndrome (Link)
• PWS Medical Alert in several languages –International PWS Organisation (Link)