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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.

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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 Confer

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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 (2021)

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:&

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An International Survey on the Impact of COVID-19 in Individuals with Down Syndrome

Author: Huls et al. - EClinicalMedicine (2020)

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:  

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Taking Medication for Side Effects from the COVID-19 Vaccine

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

As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain

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Addressing Common Health Conditions in Adults with Down Syndrome Webinar Recording (2/10/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD on February 10, 2021. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrome Center. In this present

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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

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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

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Tips for Running Virtual Social Groups

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain

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Prostate Cancer Screening in Men with Down Syndrome

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

Should men with Down syndrome (DS) undergo prostate specific antigen (PSA) blood testing for prostate cancer screening? The United States Preventive Services Task Force (USPSTF) recommends the followi

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Medical Care of Adults with Down Syndrome: A Clinical Guideline

Author: Tsou et al. - JAMA (2020)

Abstract Importance:  Down syndrome is the most common chromosomal condition, and average life expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite the u

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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 (2020)

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

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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.

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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 can be foun

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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

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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

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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

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Co-Occurring Medical Conditions in Adults with Down Syndrome. Part II.

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

Abstract Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. Many of these conditions are of public health importance wit

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Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

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Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether m

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Employment Resources

Author: Grace O’Connor and Ann Garcia - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

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College and Vocational Training Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

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Recreational and Social Opportunities

Author: Grace O’Connor and Ann Garcia - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

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Alternatives to Workshops

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga

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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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