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For people with Down syndrome, family members, caregivers and professionals.

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Visuals and Videos About the COVID-19 Vaccine

Author: Adult Down Syndrome Center - Resource List

Several organizations have created helpful resources about COVID-19 vaccines. We have provided links to some of them below.  VISUALS / PLAIN LANGUAGE RESOURCES Getting the COVID-19 Vaccine &a

Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.

Regression in Down Syndrome Support Group

Author: Eileen Quinn, MD - Moderator

The link below takes you to a closed Facebook page for families, caregivers, and professionals who support individuals with Down syndrome who have experienced or are experiencing regression. If you cl

Mental Health Causes for Behavior Change During a Pandemic Webinar Recording (3/28/2021)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on March 28, 2021, as part of the Massachusetts Down Syndrome Congress 37th Annual Virtual Confe

The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States

Author: Gleason et al. - NEJM Catalyst, Commentary

Summary A cross-sectional study of 64,858,460 patients across 547 health care organizations reveals that having an intellectual disability was the strongest independent risk factor for presenting with

Medical Vulnerability of Individuals with Down Syndrome to Severe COVID-19 - Data from the Trisomy 21 Research Society and the UK ISARIC4C Survey

Author: Huls et al. - EClinicalMedicine

Abstract Background:  Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19.  Methods:&

Visuals and Videos About Wearing Masks During COVID-19

Author: Adult Down Syndrome Center - Resource List

Several organizations have created helpful resources about wearing masks during COVID-19. We have provided links to some of them below.  VISUALS / STORIES / PLAIN LANGUAGE RESOURCES Wearing a

Routines during the Pandemic

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h

Pneumonia and Respiratory Infections in Down Syndrome: A Scoping Review of the Literature

Author: Santoro et al. - American Journal of Medical Genetics Part A (2020)

Abstract Pneumonia and respiratory infections impact infants and children with Down syndrome; pneumonia is a leading cause of mortality in adults with Down syndrome. We aimed to review the literature

Clinical Characteristics of Individuals with Down Syndrome Deceased with COVID-19 in Italy - A Case Series

Author: Villani et al. - American Journal of Medical Genetics Part A

Abstract Background:  Persons with Down syndrome (DS) are presumed to be at high risk of severe CoVID-19 due to immune dysregulation and often compromised cardiopulmonary function. Aim of the

How to Wash Your Hands Visual

Author: Adult Down Syndrome Center

This visual handout corresponds to our video on how to wash your hands. It shows the steps for handwashing.

How to Wash Your Hands Video

Author: Adult Down Syndrome Center - Video

In this video below, Jeff demonstrates how we should wash our hands. As Jeff explains, handwashing is an important thing we can do to keep ourselves healthy! A corresponding visual handout  

Hospital Visitor Policies During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution  on the first federal com

Down Syndrome Disintegrative Disorder: A Clinical Regression Syndrome of Increasing Importance

Author: Rosso et al. - Pediatrics (2020)

Abstract Down syndrome disintegrative disorder (DSDD), a developmental regression in children with Down syndrome (DS), is a clinical entity that is characterized by a loss of previously acquired adapt

Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

Refusal to Eat Solid Foods

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

Unexplained Regression in Down Syndrome: 35 Cases from an International Down Syndrome Database

Author: Santoro et al. - Genetics in Medicine (2019)

Abstract Purpose:  An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.  Me

Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles et al. - Neuropsychiatric Disease and Treatment

Abstract Objective:  The goal is to expand our knowledge of catatonia occurring in adolescents and young adults with Down syndrome (DS) by describing the first prospective, consecutive, well-

Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin et al. (2015) - Neuropsychiatric Disease and Treatment (2015)

Abstract Objective:  The main aim of this case series report is to alert physicians to the occurrence of catatonia in Down syndrome (DS). A second aim is to stimulate the study of regression

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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