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

Duration: 18 ms, Number of Results: 61

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Using First/Then Boards

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

We like to use visual supports to set or manage expectations. One type of visual support that can be helpful is a first/then board. When using a visual support, there can be words, pictures, or a comb

Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

Visits to a Doctor's Office

Author: Adult Down Syndrome Center

This visual support explains what to expect when you go to a doctor's appointment.

Individualized Visual Schedules

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

Visuals tend to be most effective when they are individualized. What works for one person may be different than what works for another person. Schedules are one example of a type of visual that may va

Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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

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 4/12/2022 The providers at the Adult Down Syndrome Center continue to encourage individuals with Down syndrome to be cautious in protecting themselves against COVID-19 infection. The infection

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

Taking Charge of My Appointment

Author: Adult Down Syndrome Center

Individuals with Down syndrome can use this handout before, during, and after health appointments to help them advocate for their health.

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

Healthy Ways to Celebrate World Down Syndrome Day

Author: Adult Down Syndrome Center

This handout lists 21 activities you can do to promote your physical, mental, and social health on World Down Syndrome Day!

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 Prevention (CDC) recom

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

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

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 phl

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

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 res

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

Gout in People with Down Syndrome

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

Gout is more common in people with Down syndrome (DS) (as indicated by the studies at this link  and this link ). Gout is a type of inflammatory arthritis caused by

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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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