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

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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

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.

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

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.

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!

Template for Writing Goals

Author: Adult Down Syndrome Center

This handout explains how to and provides a template for writing a goal and making a plan to achieve the goal.

Overview of Writing Goals

Author: Adult Down Syndrome Center

This handout shares information about how to write goals.

Healthy Lifestyle Activity Book

Author: Adult Down Syndrome Center

Complete activities related to five areas of health and wellness - nutrition, hydration, sleep, exercise, and stress management.

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.

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 can be foun

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

Staying Hydrated

Author: Adult Down Syndrome Center

This handout explains why it is important to drink water and stay hydrated.

Drinking Water

Author: Adult Down Syndrome Center

This handout explains how much water we should drink each day.

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.  M

Erin's Tips for Living a Healthy Lifestyle Video

Author: Adult Down Syndrome Center - Video

In the video below, Erin shares tips for living a healthy lifestyle. As Erin says, "Living a healthy lifestyle can be really hard," but her tips can help make it easier! 

Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles, Takahashi, Muckerman, Nowell, Ithman - Neuropsychiatric Disease and Treatment - 2019

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-

My Health Passport

Author: Florida Center for Inclusive Communities

This health passport can be filled out by individuals with Down syndrome and their families to share information with health care professionals about how they can best support the individual.

Regression in Adolescents and Adults with Down Syndrome

Author: Chicoine & Capone - Chapter in Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract: There has been a growing number of clinical case reports of regression in adolescents and adults with Down syndrome who have shown unexpected and severe regression in cognitive and adaptive

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome

Author: de Knegt et al. - Pain Medicine (2017)

Abstract: Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants’ report) and self-reported pain experience in adults with Down syndrom

Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin, Nassiri, & Miles (2015) - Neuropsychiatric Disease and Treatment

Abstract Objective:  The main aim of this case series report is to alert physicians to the occurrence of catatonia in Down syndrome (DS). A second aim is to stimulate the study of regression

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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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