The coronavirus/COVID-19 pandemic has had a dramatic impact on everyone. As an increasing number of places begin loosening their initial restrictions, every family is now struggling to establish a “new normal”.
Many of you are looking for concrete answers on how to keep yourself and your loved ones safe, and you are not alone. Unfortunately, we are living in unprecedented times without clear answers on how to move forward. Doctors and scientists are learning more about the diagnosis, management and treatment of COVID-19. However, much is still unknown. Recommendations and guidelines are frequently changing and communities (schools, hospitals, stores, etc.) are adjusting their way of operating at a rapid pace. Many families are now faced with difficult decisions based on partial information. Should my daughter return to school or restart therapy? Should my son report to his job in the local grocery store?
Unfortunately, there is no one answer to any of the excellent questions being asked. Additionally, and more troubling, there is no “risk-free” answer to many of the questions. Therefore, every family will have to assess the risks associated with each possible solution and decide what level of risk they are most comfortable with.
Broadly speaking, families are struggling to balance issues that fall into two categories:
A) Risks associated with coronavirus/COVID-19:
a. What are my/my family member’s chances of becoming infected with coronavirus;
b. What are my/my family member’s chances of becoming seriously ill if s/he does become infected with COVID-19; and
c. Are there other “at risk” family members who would be placed in danger if my child brought coronavirus into the home?
B) Risks associated with not going out/back to school/returning to work, etc.?
In terms of what medical risks apply to the general population, we encourage you to read the helpful publications on the Centers for Disease Control (CDC) website as they will have the most up-to-date information and guidelines (https://www.cdc.gov/coronavirus/2019-nCoV/index.html). You should also review the data collected on infection frequency and re-opening guidelines specific to your state and city or town.
In terms of what medial risks apply to persons with Williams syndrome, an understandable question is “What additional risks, if any, are posed by the diagnosis of Williams syndrome”? The information in the box below is based on what we know as of July 2020.
We recommend you review the CDC categories for higher risk individuals and speak with your doctor about any specific concerns.
Questions to Consider:
We cannot provide any specific or easy answers. However, after carefully reviewing the available information, the guidelines, and your options there are questions you should all consider as you make your personal decision:
- How many people will I/my family member be in contact with?
- What is the general rate of COVID-19 in my community?
- What is being done in my/my family member’s work or school environment to decrease the risk of getting sick?
- What are my/my family member’s specific health concerns?
- Am I/my family member considered high risk for any reason?
- Are there any alternative solutions or compromises?
There is no single, straightforward answer, and ultimately a decision on whether or not to re-engage with the community is up to you and your family. That decision will be best made after close consideration of the risks and benefits in light of the available information. It is also important to remember that your decision needs to be fluid and should be re-evaluated based on new developments in terms of diagnosis and treatment, and the status of the outbreak in your community.
Jessica Waxler MS and Barbara Pober MD
Williams Syndrome Clinic, Massachusetts General Hospital, Boston, MA.