COVID-19 and PWS Alert - Prader-Willi Syndrome Association NZ

COVID-19 and PWS

Not all individuals with PWS will respond in the same way to illness and their ability to fight a virus such as Covid-19 will vary. A small survey and some early study data* has shown that people with PWS who have been infected with Covid-19 have experienced more favourable outcomes than expected. This research indicates that PWS itself is not a risk factor for severe Covid-19, rather the outcomes may be dependent on comorbidities as they might be for the general population.

It is thought that the majority of people with PWS are not immune compromised, however, the underlying health conditions or comorbidities associated with PWS mean that if some individuals were to become infected with Covid-19, they may be more likely to experience complications of illness.

Respiratory tract infections can significantly affect some people with PWS, particularly if they are obese or have sleep apnoea /sleep disordered breathing. The ability to cough effectively and clear airways is also affected by the degree of hypotonia.

It should also be noted that serious illness can sometimes be difficult to detect and monitor in PWS due to body temperature irregularities and the possibilities of a high pain threshold or lack of vomiting. It may also be unlikely that a person with PWS has a reduction in appetite because they are feeling unwell. Therefore, individuals with PWS may not present with typical symptoms of Covid-19, such as fever, and the only indicators of illness may be subtle changes in appearance, sleep, anxiety or behaviour.

If you are evaluating an individual with PWS, please make use of the Medical Alerts booklet or the medical information on this website, particularly the section on respiratory concerns and the A&E resources. Additional risk factors for PWS to consider may include:

significant hypotonia
weak respiratory system in infancy
sleep apnoea / sleep disordered breathing (or history of snoring / history of excessive daytime sleepiness)
diabetes
obesity
premature aging in mid-adulthood (investigated further in more recent studies)
hypertension (high blood pressure)
hypoventilation
cardio vascular disease
central adrenal insufficiency
history of respiratory illness
history of pulmonary embolism

* It should be noted that older adults were not represented in the French study (mean age = 34 years) and most patients were on vitamin D supplementation.