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

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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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Tips for Washing and Rinsing Hair

Author: Adult Down Syndrome Center - Article

Some families have shared with us that washing and rinsing hair can be a challenging task for their loved ones with Down syndrome. We have compiled a list of suggestions from families for mak

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Folliculitis and Boils in People with Down Syndrome

Author: Adult Down Syndrome Center - Article

Folliculitis and boils are two skin conditions that are more common in people with Down syndrome than in people without Down syndrome. The article below describes these conditions, how they are diagno

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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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Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

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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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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

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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  

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Dermatologic Conditions in Down Syndrome: A Single-Center Retrospective Chart Review

Author: Rork et al. - Pediatric Dermatology

Abstract Background:  Current literature addressing dermatologic conditions associated with Down syndrome is limited, with emphasis on rare skin conditions and lack of consensus on the incide

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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

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Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

A common method to test for COVID-19 is to use a long swab to collect a specimen from the nasopharyngeal region, which is located at the back of the inside of the nose.  While the procedure i

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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

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Lotion Options

Author: Adult Down Syndrome Center

Some people do not like the feeling of lotion or creams. This handout shows examples of lotions that can be used on wet skin and lotions that can be sprayed on skin.

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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

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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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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-

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Dental Care Guidance for Caregivers of Patients with Down Syndrome

Author: Greg Grillo, DDS and Andrew Jordan, DDM - Dentably

Dental Care Guidance for Caregivers of Patients with Down Syndrome  is an article that shares information about common dental problems, finding the right dentist, sedation, appointment prepar

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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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Skin Care Handout

Author: Adult Down Syndrome Center

This is a visual support that is based on the Skin Care video featuring Molly and Peter.

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Seborrheic Dermatitis

Author: Pathik Patel, DO - Family Medicine, Advocate Lutheran General Hospital

Skin disorders are common in individuals with Down syndrome. Seborrheic dermatitis is one of the more common skin problems. It is a chronic, relapsing form of dermatitis (inflammation of the skin) cha

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The Pattern of Malignancies in Down Syndrome and Its Potential Context with the Immune System

Author: Satge & Seidel - Frontiers in Immunology (2018)

Abstract The immune surveillance theory of cancer posits that the body's immune system detects and destroys randomly occurring malignant cells. This theory is based on the observation of the i

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How to Shave with an Electric Razor Video

Author: Adult Down Syndrome Center - Video

In this video, Tim and Jim discuss and demonstrate the basic steps for shaving with and cleaning an electric razor.  Thank you to  Avenues to Independence    for pr

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Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unreco

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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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