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

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below!  There are ideas for arts and crafts , cooking , education/learning , fitness and physical activity , and games .        Arts and Crafts &nb

COVID-19 & Down Syndrome Resource

Author: National Consortium - DSMIG-USA, Global, LuMind IDSC, NDSC, NDSS, NTG

Throughout the COVID-19 pandemic, a national consortium of organizations has shared a document with information on COVID-19 and Down syndrome. The organizations in the consortium are the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind I

Self-Talk in People with Down Syndrome Webinar Slides (11/10/2021)

Author: Brian Chicoine, MD

This document contains the slides from Dr. Brian Chicoine's presentation on self-talk in people with Down syndrome.

Self-Talk in People with Down Syndrome Webinar Recording (11/10/2021)

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 November 10, 2021. Dr. Chicoine is the co-founder and medical director at the Adult Down Syndrome Center. The topic of the webinar was self-talk. Self-talk is a conversation with oneself or imaginary friends. It can be a

Advancements in the Treatment of Obstructive Sleep Apnea Webinar Recording (11/8/2021)

Author: Michael Layland, MD - Otolaryngologist

The video below is a recording of a webinar presented by Dr. Michael Layland on November 8, 2021. Dr. Layland is an otolaryngologist at the Ear Nose & Throat Center and Advocate Lutheran General Hospital. He explained how Inspire Therapy works, the procedure, clinical results, coverage, and

Water Tracker

Author: Adult Down Syndrome Center

This handout can be used to mark off how much water you drink each day.

COVID-19 Vaccine Information

Author: Adult Down Syndrome Center - Resource List

General Vaccine Information ​Individuals who are 5 years of age and older are eligible to receive COVID-19 vaccinations. The website of the Centers for Disease Control and Prevention (CDC) has recommendations based on a person's residence, occupation, medical conditions, and other fact

Tips for Successful Blood Draws

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

Do you or does a family member or friend with Down syndrome dread getting blood drawn? Here are some tips to help with blood draws:  Make sure to be hydrated ! This will help the phlebotomist find the vein. Sensory strategies prior to a blood draw may help calm anxiety. Propriocept

Celebrating Holidays During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

Updated November 2021 : We originally shared this resource in 2020 before COVID-19 vaccinations were available. The CDC has updated the page on celebrating holidays during the COVID-19 pandemic to include information that accounts for the availability of vaccines.  We have received

Down Syndrome and Hidradenitis Suppurativa

Author: The Society for Pediatric Dermatology - Patient education

Hidradenitis suppurativa (HS) is a chronic skin condition that causes painful bumps under the skin. The handout linked below was developed by the Society for Pediatric Dermatology . Information specific to Down syndrome was provided by Jillian Rork, MD.    Link to handout  

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 children with DS, which is necessary to inform COVID-19 shielding advice and vaccination priorities.

COVID-19 Booster Shots and Third Doses

Author: Adult Down Syndrome Center - Resource

UPDATED 10/29/2021:  The physicians at the Adult Down Syndrome Center shared information about COVID-19 booster shots for individuals with Down syndrome in the article linked  here . 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & John

Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

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

UPDATED 11/22/2021 The CDC expanded the list of people who  may  get a booster to include people age 18 years and older who received Pfizer-BioNTech or Moderna COVID-19 vaccines. UPDATED 10/29/2021 In October 2021, the Centers for Disease Control and Prevention (CDC) updated the re

Weight Management in Adults with Down Syndrome

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

Weight management can be challenging. It is likely that part of the reason is that there are factors for which our understanding is limited. While a great deal has been learned, more research is being done to improve our understanding and to learn how that knowledge can be used for improved weight m

Keratoconus in People with Down Syndrome

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

We received a question about treatment of keratoconus in people with Down syndrome.  What is keratoconus? Keratoconus is an eye condition in which the cornea (the clear part in the front of the eye) becomes thinner and more curved. This causes the cornea to become cone-like in shape and to

Selective Mutism and Other Causes of Loss of Speech in People with Down Syndrome

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

We were sent a question about selective mutism and loss of speech. Selective mutism is defined as an anxiety condition in which a person with normal verbal skills is unable to speak in particular settings. For those without an intellectual disability, this is typically described in children but can

Qualities of Good Friends

Author: Adult Down Syndrome Center

What do we like about our friends? As this handout shows, good friends usually use nice words, do kind things, listen, tell the truth, have boundaries, apologize, take turns, and say how they feel.

Swallowing Problems (Dysphagia)

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

Swallowing problems (dysphagia) are common in people with Down syndrome (DS). In our large cohort study that reviewed health data from people cared for within Advocate Health, swallowing problems were more than 6 times more common in people with DS compared to people without DS. Some swallowing issu

Dental Implants

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

We sometimes receive questions about dental implants. A small number of people with Down syndrome seen in our office have reported that they opted to get dental implants, and most of these individuals have successfully received dental implants. There are several issues to consider that will increase

Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

In October 2021, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for families called "Regression in Persons with Down Syndrome." The resource can be accessed at this link .

Promoting Mental Health in Adolescents & Adults with Down Syndrome Webinar Slides (9/28/2021)

Author: Brian Chicoine, MD

This document contains slides from a webinar on promoting mental health and addressing mental health challenges in adolescents and adults with Down syndrome. It was presented by Dr. Brian Chicoine.

Promoting Mental Health in Adolescents & Adults with Down Syndrome Webinar Recording (9/28/2021)

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

The video below is a recording of a webinar called "Promoting Mental Health in Adolescents & Adults with Down Syndrome" presented by Brian Chicoine, MD on September 28, 2021. It was hosted by the Down Syndrome Association of Delaware. The presentation begins at 19 min. 28 s

Questions to Ask When Prescribed a New Medication

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

Are you a person with Down syndrome and you are being prescribed a new medication? Are you assisting a person with Down syndrome with their health care and the individual is being prescribed a new medication? What are some of the things that should be considered? Some general questions to ask before

Risk Prediction of COVID-19 Related Death and Hospital Admission in Adults after COVID-19 Vaccination

Author: Hippisley-Cox et al. - The BMJ (2021)

Abstract: Objectives:  To derive and validate risk prediction algorithms to estimate the risk of COVID-19 related mortality and hospital admission in UK adults after one or two doses of COVID-19 vaccination. Design:  Prospective, population based cohort study using the QResearch da

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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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