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

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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

Create a Showering or Bathing Routine Visual

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

The images and template below can be used by individuals with Down syndrome and their families to create a visual showing the steps of their showering or bathing routine.    Print on

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 9/9/2022 The physicians of the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follow the recommendations of

Toilet Hygiene

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

Thorough toilet hygiene is difficult for many individuals with Down syndrome. However, there are several options to increase independence and success with toilet hygiene. Use pre-moistened wipes . Be

Tips for Managing Medications

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

Whether on one medication or many, people with and without Down Syndrome have difficulty taking medication as prescribed. The following tips can help simplify medication management and prevent missed

Pneumococcal Vaccines

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

April 2022: We updated this resource to include information about Prevnar 20 (pneumococcal conjugate vaccine, PCV20). What is pneumococcal disease?  Pneumococcal disease is caused by

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

Story About Grooming/Hygiene for Girls

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

Story About Grooming/Hygiene for Boys

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

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

Author: Chicoine et al. - The Journal of the American Board of Family Medicine (2022)

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

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

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

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

Down Syndrome EyeWiki

Author: American Academy of Ophthalmology - Eye Encyclopedia

EyeWiki is an Eye Encyclopedia developed by the American Academy of Ophthalmology with content contributed by ophthalmologists (eye physicians and surgeons). There is a Down syndrome page wit

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 (2022)

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

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

Author: Valentini et al. - Journal of Clinical Medicine (2022)

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

Wearing Face Masks During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED 1/14/2022 : The CDC has provided updated information on what types of masks to wear  and how to improve how your mask fits   .  The Centers for Disease Control and P

Adaptive Clothing

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

Dressing can be difficult for some individuals with Down syndrome, in part because bilateral coordination and dexterity skills can be challenging for many individuals with Down syndrome. I ha

T21RS COVID-19 and Down Syndrome

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 Down syndro

Surgery to Correct Eye Crossing (Strabismus)

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

We were asked about recurrence of strabismus that had been corrected by surgery in childhood. Strabismus is crossing of the eyes. The eyes of an individual with strabismus are not lined up properly an

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

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

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 t

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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