Q&A on COVID-19 and Down Syndrome

Expanded Version ● From March 25, 2020

SUPPORTING ORGANIZATIONS:
Down Syndrome Affiliates in Action, Gigi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, T21 Research Society

The unprecedented spread of the Coronavirus Disease 2019 (COVID-19) is presenting the world with a unique challenge and, in our case, calls for a united response to better understand its impact on the Down syndrome community.

Information in this Question and Answer (Q&A) document can be used to help you support your loved one with Down syndrome. It is our hope that this information will help us get through this health challenge. We encourage you to share the information in this document with your family, friends, educational and medical providers, and others within the Down syndrome community.

We have done our best to answer questions that are currently being asked and anticipate other important questions relevant to our Down syndrome community. In this document you’ll find:

  • What may be unique about the virus in people with Down syndrome.
  • How to help prevent the spread of the virus.
  • What are common symptoms.
  • What to think about when making decisions.

This Expanded Version and an Abbreviated Version of this Q&A are available. Many organizations and professionals have contributed to both versions – by providing their expertise on Down syndrome and applying it to what we know about COVID-19 at this time. As we learn more about COVID-19 in general, and about how it may or may not affect people with Down syndrome, we will endeavor to update this Q&A in a timely way.

To be clear, this Q&A is informational only and not intended to provide medical advice or related advice. It is intended to provide information that we hope is useful to you as you confront decisions and consider seeking medical, educational, or other recommendations. This Q&A should NOT be considered a substitute for the advice of a medical or related professional. You should consult with your own doctor or other healthcare professional(s) for medical advice.

Please be sure that the information you receive is from reliable, trusted, and recognized sources.  We recommend the Centers for Disease Control and Prevention (CDC) and websites ending with “.gov” in the United States. International, federal, and state health department websites should be the most reliable. Also, we encourage you to look to the websites of organizations who support the Down syndrome community, which are listed at the end of this Q&A.

We encourage you to submit any further questions or comments to us at t21covid@lumindidsc.org. We will share with the collaborating group and review as part of regular future updates of this resource. Our collective efforts will strengthen the community’s access to valuable resources to stay safe and healthy.

IMPORTANT REMINDERS

If you suspect you, a loved one, or someone in your care may have COVID-19, please call your healthcare professional as soon as possible. Calling first is strongly recommended before traveling to/from an office or hospital, as your time spent there may increase exposure to COVID-19 for you and others.

If you are a parent or caregiver, please remember to take care of yourself. It is difficult and sometimes impossible to care for others if you are sick or too tired. It is also important not to spread your sickness.  Stay healthy for the sake of those who depend on you.

If you have the time and energy, we also encourage you to check in with your family and friends – especially those who may be struggling with this health emergency. A phone call and text goes a long way to show someone you care. Finally, in the coming days and weeks, if possible, share resources and supplies with your family, friends and community members who are in need.

In the event of an emergency please call 911.


The following organizations contributed their time, resources and expertise to this Q&A, and have additional, useful information and the websites provided below:

Down Syndrome Medical Interest Group-USA (DSMIG-USA)
Global Down Syndrome Foundation (GLOBAL)
Lumind IDSC Down Syndrome Foundation (LuMind IDSC)
National Down Syndrome Congress (NDSC)
National Down Syndrome Society (NDSS)
National Task Group on Intellectual Disabilities and Dementia Practices (NTG)

The following individuals contributed their time and expertise to the content of this Q&A:

Nicole Baumer MD, Thomas Buckley EdD, Marilyn Bull MD, Rejena Carmichael, Brian Chicoine MD, Lawrence Force PhD, Paula Gann, Bryn Gelaro LSW, Sara Goldberg, Colleen Hatcher, Elizabeth Head PhD, Jim Hendrix PhD, Hampus Hillerstrom, Mary Hogan MAT, Matthew Janicki PhD, Nancy Jokinen PhD, Seth Keller MD, Florence Lai MD, Megan Lindstrom, Ronald Lucchino PhD, Benjamin Margolis MD, Barry Martin MD, Philip McCallion PhD, Andrew Nowalk MD, Lina Patel PsyD, Kathryn Pears MPPM, Steve Perlman DDS, Kandi Pickard, Mary Pipan MD, Tamara Pursley, Rick Rader MD, Dennis Rosen MD, Kathryn Service NP, Stephanie Sherman PhD, Brian Skotko MD MPP, Maria Stanley MD, David Tolleson, Dawna Mughal Torres PhD, Amy Van Bergen, Kishore Vellody MD, Michelle Sie Whitten, Alan Wong DDS.

Note:

This Q&A was developed jointly by several national organizations, including Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Down Syndrome Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). You can find this resource on each organization’s website in the public domain. The documents will be updated as new and additional information is presented.

We are very thankful for the input received from the many experts who contributed and reviewed the Q&A. We acknowledge the contribution of the lead author Dr. Matthew P. Janicki, PhD, co-chair of the US National Task Group on Intellectual Disabilities and Dementia Practices.

Thank you to Dr. Jesus Florez, Presidente, Fundación Iberoamericana Down21 and Dr. Macarena Lizama, EDirectora Ejecutiva, Centro UC Síndrome de Down, for providing the Spanish translation of the Q&A.

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