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Perspectives on Pain in Down Syndrome

Author: Shaikh et al. - Medicinal Research Reviews

Abstract Down syndrome (DS) or trisomy 21 is a genetic condition often accompanied by chronic pain caused by congenital abnormalities and/or conditions, such as osteoarthritis, recurrent infections, a

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Behavior Changes in Individuals with Down Syndrome Webinar Recording (2/23/2023)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD, Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW, on February 23, 2023. In this webinar, the presenters define, iden

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Acrocyanosis

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

What is acrocyanosis? Acrocyanosis is the bluish discoloration of the extremities (usually the hands and/or feet) due to decreased oxygen being delivered to those areas. The small blood vessels in the

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Long COVID in Adults with Intellectual Disabilities

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

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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Recommendations for Treatment of Mild to Moderate COVID-19 Infection

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

We have only seen or heard of a few cases of severe COVID-19 infection in our patients with Down syndrome who have received COVID-19 vaccines. Our experience has been consistent with the data

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Warning Signs a Person with Down Syndrome is Getting Overheated

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

Exercise is important for people with Down syndrome just as it is for all people. For all people, care must be taken to avoid overdoing it with exercise. Excessive sweating can be a sign to ease back,

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Ableism at the Bedside: People with Intellectual Disabilities and COVID-19

Author: Chicoine et al. - The Journal of the American Board of Family Medicine

Abstract People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comor

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COVID-19 Vaccination of Individuals with Down Syndrome - Data from the Trisomy 21 Research Society Survey

Author: Huls et al. - Vaccines (2022)

Abstract Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS

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Immune Response to COVID-19 Vaccines

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

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

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Impact of the COVID-19 Pandemic on Daily Life, Mood, and Behavior of Adults with Down Syndrome

Author: Hartley et al. - Disability and Health Journal

Abstract Background:  The Down syndrome population has been disproportionately affected by Coronavirus 2019 (COVID-19) in terms of experiencing severe illness and death. Soc

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Unexplained Weight Loss

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

What can cause unexplained weight loss? We were sent a question about unexplained weight loss. We are sharing some information here for general knowledge and/or information that can be used in consult

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Testicular Cancer

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

Key Points Testicular cancer is more common in men with Down syndrome compared to men without Down syndrome. Health care providers can check for testicular cancer during an annual physical exam. Testi

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Safety and Long-Term Immunogenicity of BNT162b2 Vaccine in Individuals with Down Syndrome

Author: Valentini et al. - Journal of Clinical Medicine

Abstract We aimed to evaluate the safety and immunogenicity of the BNT162b2 vaccine in young people with Down syndrome (DS), and to compare their humoral immune response with those of the healthy cont

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T21RS COVID-19 and Down Syndrome Survey

Author: Trisomy 21 Research Society - COVID-19 Taskforce

The Trisomy 21 Research Society  (T21RS) has developed several taskforces in response to the COVID-19 pandemic. The taskforces are studying COVID-19 infection and vaccination in people with D

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DSMIG-USA IDD COVID-19 Vaccination Position Statement

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement has been updated several times, most recently on Novemb

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COVID-19 in Children with Down Syndrome: Data from the Trisomy 21 Research Society Survey

Author: Emes et al. - Journal of Clinical Medicine (2021)

Abstract Adults with Down syndrome (DS) are at higher risk for severe outcomes of coronavirus disease 2019 (COVID-19) then the general population, but evidence is required to understand the risks for

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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

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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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Helping Children and Adults with Down Syndrome to Cope with Grief Webinar Recording (7/28/2021)

Author: Rose Reif, MS, LCMHC, CRC, BC-TMH - Down Syndrome Association of Delaware

On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,

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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

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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

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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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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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

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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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