Medical Care and Intervention Therapies

Many of the health issues caused by the disability that emerge in childhood continue into adulthood.  The state of general health, disability and wellbeing is directly correlated to the level of obesity of the person with Prader-Willi Syndrome (PWS).

There are subtle differences in the genetic problem causing PWS and not everyone affected by PWS will have all the functional impairments or the medical issues. The degree to which they are affected may also vary from person to person.

“The basics of a healthy adult life for someone with Prader-Willi Syndrome include a healthy, appropriate eating plan and regular, effective physical activity to avoid obesity, to keep the body fit and to maintain good mental health. Before any of these can be achieved the people working with the person who has PWS must have a good understanding of the complexities of the syndrome.”

‘Good Health Check’ – Famcare project

Even though they are adults, due to the complexities of PWS, people with PWS are not able to accurately monitor their own health and wellbeing.

The person with PWS relies on those supporting him/her to be a vigilant observer of changes in their health & behaviour that indicate a problem:

  • People with PWS have a high pain tolerance and may not complain of pain until an injury or infection is severe
  • Fatigue and tiredness may be a sign of illness
  • Increased bruising and swelling are common.
  • Individuals may report feeling unwell but not be able to pinpoint source of pain.
  • Vomiting rarely occurs in individuals with PWS. The presence of vomiting in someone with PWS may indicate a life-threatening illness.
  • Strict adherence to a low-calorie diet and exercise routine to manage diabetes 

Regular medical check-ups are very important in the maintenance of good health and wellbeing of adults with PWS

While there are specific areas of concern which require regular checking always be mindful that people with PWS are all different and may also have health problems which are not related to PWS.

Chronic areas of concern which require checking for people with PWS are:

  • Weight and body mass index
  • Blood pressure
  • Sleep Apnoea-even when obesity is not a problem
  • hormone deficiencies and replacement therapy
  • Scoliosis
  • Osteoporosis-due to lack of sex hormone
  • Diabetes-type 2
  • Oedema-water retention
  • Skin infections
  • Constipation
  • Hypothyroidism (underactive thyroid)
  • Foot health, gait and orthotics
  • Dental issues

Acute areas of concern include:

  • Heart problems and respiratory problems (Major cause of illness and death related to obesity)
  • Pneumonia (ensure that the person is vaccinated)
  • Gastric necrosis (due to binge eating)
  • Choking
  • Septicaemia
  • Complication from diabetes
  • Food poisoning

The Australian Medical Alert Booklet

Remember to share The Australian Medical Alert Booklet with anyone supporting or caring for your child.

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