Q&A on COVID-19 and Down Syndrome

Abbreviated Version ● From July 31, 2020

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

Information in this Question and Answer (Q&A) document is here to help you care for your loved one with Down syndrome during the Coronavirus Disease 2019 (COVID-19) pandemic.  Please share this information freely.

We have tried to answer questions that are important:

  • What is unique about the virus in people with Down syndrome.
  • How to help prevent the spread of the virus.
  • What 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 continue to update this Q&A.

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 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.

If you think you or anyone in your care may have COVID-19, call your doctor or other health professional immediately. Calling first is important. Going to an office or a hospital makes your risk of possibly catching or spreading the virus greater. If you call first, the office or hospital will be prepared for you. If you have an emergency, please call 911.

It’s important to take care of yourself. If you are sick or too tired, you cannot care for others. Stay healthy! Others depend on you. When you can, check in with family and friends. They may have problems with this health emergency and could use your help.

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.

It’s important to take care of yourself. If you are sick or too tired, you cannot care for others. Stay healthy! Others depend on you. When you can, check in with family and friends. They may have problems with this health emergency and could use your help.

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.


 

  • For more information on COVID-19 and people with Down syndrome, Dr. Kishore Vellody of the Down Syndrome Center at Children’s Hospital of Pittsburgh released a podcast with guest, Dr. Andrew Nowalk, a pediatric infection disease expert. You can listen to this podcast.
  • For general information about the coronavirus and advice for direct support personnel, you can watch this video by Dr. Rick Rader, of the American Academy of Developmental Medicine and Dentistry.
  • American Academy of Pediatrics healthychildren.org (Trending topics and quick links-English and Spanish).

The following organizations contributed their time, resources and expertise to this Q&A. You can download and access the Expanded Version of this Q&A from their websites:

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.

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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