The threat of illness is always a potential danger to those with PWS, their families and community. We advise our families to continue to be extra vigilant in their efforts to prevent the spread of viral illness, especially at this time when COVID-19 is likely already present in our communities. Misinformation regarding COVID-19 has been rampant, so we urge our community to speak to medical professionals directly and visit only trusted websites, such as the ones listed below.   

 

IPWSO's PWS and COVID-19 Survey

 

If your loved one with Prader-Willi Syndrome has been infected with COVID-19 at any point, consider taking the online survey created by the Clinical and Scientific Advisory Board and the Professional Providers and Caregivers Board of the International Prader-Willi Syndrome Organisation (IPWSO).

The aims of the survey are to determine the following:

  1. How does COVID-19 infection present in people with PWS?

  2. What are the course and outcomes of COVID-19 infection in people with PWS?

  3. What factors influence the course and outcomes of COVID-19 infection in people with PWS?

  4. What are the implications of the above for prevention and treatment in the present pandemic and any future epidemic?

 

Some early results from the IPWSO PWS and COVID-19 survey have been shared on the IPWSO website. Click here to access the results.

Coping Through COVID-19

 

The challenges of COVID-19 have impacted all of us in many ways. Our family members with PWS are unable to go to school, work, or participate in recreational or community programs. As a repercussion, many of our families are experiencing stress in its various forms. 

 

Here are some supports that may help you and your family:

 

  • Strategies for Managing PWS Related Behaviors During COVID-19: Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar hosted by the Foundation for Prader-Willi Research, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world.

 

If you need help, we're here for you. Please call us at 1-800-563-1123 or email ontariopws@gmail.com, and we’ll do our best to support you.

Prader-Willi Syndrome and COVID-19 Vaccinations

 

According to the Prader-Willi Syndrome Association | USA Statement from Members of the Clinical Advisory Board (CAB) Regarding People with PWS and COVID-19 Immunization, “PWSA | USA understands that decisions regarding COVID-19 vaccination is a personal/family decision, but advocates for vaccination, particularly among those with Prader-Willi syndrome who are at an increased potential risk for COVID-19 complications (i.e., those individuals with severe obesity, sleep apnea, diabetes and cardiovascular disease).”

The International Prader-Willi Syndrome Organisation's (IPWSO) Clinical and Scientific Advisory Board has issued a similar statement regarding people with PWS and COVID-19 immunisation.

 

Currently, the COVID-19 vaccine is only recommended for adults with Prader-Willi Syndrome.

Eligibility for Phase Two COVID-19 Vaccination in Ontario

 

For families that are interested in COVID-19 vaccination, it was just announced that individuals with intellectual or developmental disabilities are eligible in Phase Two of Ontario's vaccination distribution plan. Click here to learn more.

Prader-Willi Syndrome and COVID-19