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

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When Down Syndrome and Autism Intersect (2nd edition)

Author: Margaret Froehlke, RN, BSN, and Robin Sattel, MS - Book (2024)

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals       Publisher description The first edition of When Down Syndrome and Aut

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Tremors in People with Down Syndrome

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

Key Points Tremors are repetitive involuntary movements. Tremors can be mild and cause limited disruption or more severe and restricting. There are many causes for tremors. An evaluation by a health p

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Down Syndrome and Autism Spectrum Disorder Presentations

Author: Multiple Presenters - Multiple Organizations

The Dual Diagnosis of Down Syndrome and Autism Webinar   Presenters: Noemi Spinazzi, MD, FAAP, and Teresa Unnerstall Host Organization: Down Syndrome Connection of the Bay Area   Aut

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Down Syndrome Clinic Lists

Author: GLOBAL, NDSC, NDSS - Resource

Several national Down syndrome organizations maintain lists of Down syndrome clinics in the United States. If there is a clinic near you but adults are not seen by its providers, the clinic may be abl

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Psychogenic Non-Epileptic Seizures or Fake Seizures

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

We periodically get asked questions about “fake seizures.” They have also been called “pseudo-seizures” but are now more accurately called non-epileptic seizure

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Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

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Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

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Co-Occurring Conditions in Children with Down Syndrome and Autism: A Retrospective Study

Author: Spinazzi et al. - Journal of Neurodevelopmental Disorders (2023)

Abstract Background:  Down syndrome (DS) is one of the most common genetic causes of intellectual disability, and it is associated with an increased incidence of numerous co-occurring conditi

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Getting an EEG Visual

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

This Getting an EEG visual  explains what happens when we have an electroencephalogram (EEG) done. It can help individuals with Down syndrome know what to expect when going for an EEG. Additi

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Attention Deficit/Hyperactivity Disorder (AD/HD)

Author: Brian Chicoine, MD, and Dennis McGuire, PhD, LCSW - Adult Down Syndrome Center

*This article was adapted from  Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges, 2nd Edition . What is attention-deficit/hyperactivi

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Financial Impact of a Specialized Down Syndrome Clinic: Implications and Support for Institutional Support of Specialty Care Clinics

Author: VanZant & Vellody - American Journal of Medical Genetics, Part A

Abstract Individuals with Down syndrome (DS) have specific health care needs and require additional screening and surveillance for commonly associated conditions. The American Academy of Pediatrics (A

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Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. - Sleep Advances: A Journal of the Sleep Research Society (2022)

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

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Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Autism Speaks and DSMIG-USA DS-ASD Workgroup - Website

It is estimated that about 16-18% of people with Down syndrome also have autism spectrum disorder (ASD). The Down Syndrome Medical Interest Group-USA DS-ASD Workgroup collaborated with Autism Speaks t

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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 Gener

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Create a Bedtime/Sleep Routine Visual

Author: Katie Frank, PhD, OTR/L

This document includes a template and images that individuals with Down syndrome and their families can use to create a bedtime routine visual.

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Night Terrors in People with Down Syndrome

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

Night terrors (or sleep terrors) are described as a sudden arousal from sleep associated with sitting up in bed, intense fear, and a piercing scream. Symptoms include increased heart rate, increased r

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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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Sleep Disorders in Adults with Down Syndrome

Author: Gimenez, Altuna, Blessing, Osorio, & Fortea - Journal of Clinical Medicine (2021)

Abstract Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinical

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Epilepsy in Down Syndrome: A Highly Prevalent Comorbidity

Author: Altuna, Gimenez, & Fortea - Journal of Clinical Medicine (2021)

Abstract Individuals with Down syndrome (DS) have an increased risk for epilepsy during the whole lifespan, but especially after age 40 years. The increase in the number of individuals with DS living

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Stroke and Vascular Disease in Down Syndrome Webinar Recording

Author: Jonathan Santoro, MD - Director of Neuroimmunology and Demyelinating Disorders Program at Children's Hospital Los Angeles, Assistant Professor of Neurology at the Keck School of Medicine at the University of Southern California

The webinar below was hosted by the Down Syndrome Association of Los Angeles. The topic was "Stroke and Vascular Disease in Down Syndrome: How to Identify and Prevent." The presenter

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ADSC Patient Questionnaires

Author: Adult Down Syndrome Center - Forms

New and returning patients to the Adult Down Syndrome Center are asked to fill out a health questionnaire to share important information with their health care provider and help guide their appointmen

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Specialty Clinics for Adults with Down Syndrome: A Clinic Survey

Author: Santoro et al. - American Journal of Medical Genetics: Part A (2021)

Abstract Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs

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Co-Occurring Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Down Syndrome-Autism Connection - Website

It is estimated that 16-18% of people with Down syndrome also have autism spectrum disorder. The Down Syndrome-Autism Connection  is a nonprofit organization that provides s

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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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