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

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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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Menstruation (Period) Visuals

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

Story About Getting My Period   Story About How to Change My Pad   Story About How to Change My Tampon   Story About How to Change My Period Panties   Story About W

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Menstrual Hygiene

Author: Katie Frank, PhD, OTR/L and Hannah Graham, MD - Adult Down Syndrome Center

One topic that comes up frequently at the Adult Down Syndrome Center is menstrual hygiene. Women with Down syndrome and their caregivers often ask us about strategies to make periods easier or even to

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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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Pelvic Exam Social Story

Author: PA ASERT and SexEdVA - Resource List

The social stories linked below are intended to help individuals with Down syndrome and other developmental or intellectual disabilities prepare for and feel more comfortable with getting a pelvic exa

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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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Tourette Syndrome and Down Syndrome

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

Tourette syndrome (TS) is a hereditary, chronic neuromuscular condition consisting of motor and vocal tics. Tics are sudden, involuntary, brief, repetitive movements and vocalizations.* Motor tics can

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Addressing Challenges with Falling or Staying Asleep

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

We frequently receive questions about sleep. Individuals with Down syndrome and/or their families report that they have difficulty falling asleep or staying asleep. In this article, we will share stra

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Sleep in Adolescents and Adults with Down Syndrome Webinar (8/4/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on August 4, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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

Author: Miles et al. - 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-

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Flat Feet in People with Down Syndrome

Author: Lorri Riley, DPM - j1 insoles

The website at the link below discusses flat feet and Down syndrome. The website also contains information about j1 insoles, a line of medical grade insoles for adults and children that are less expen

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Ways to Get Good Sleep

Author: Adult Down Syndrome Center

This visual shares things you can do to promote good sleep habits.

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Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether m

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Attention-Deficit/Hyperactivity Disorder in Individuals with Down Syndrome Video

Author: Joseph Pereira - Harvard Medical School, MassGeneral Hospital for Children

The video below was narrated and presented by Joseph Pereira, a 4th year medical student at Harvard Medical School, as part of his work with the MGH Down Syndrome Program . He shares information about

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Going to Get My Sleep Mask

Author: Children's Hospital of Wisconsin

This is a visual explanation of the process of getting a sleep mask.

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Going for a Sleep Study

Author: Children's Hospital of Wisconsin

This is a visual explanation of the process of getting a sleep study done.

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Ways to Sleep Better

Author: Adult Down Syndrome Center

This visual provides tips about how to sleep better.

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Effect of Menopause on Cognition in Women with Down Syndrome?

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

What is the effect of menopause on cognition in women with Down syndrome? Menopause , defined as the cessation of menses (periods) for 12 months, occurs at a slightly younger age in women with Down sy

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Preventing Sleep Apnea

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

We received a question from an individual in Switzerland about preventing sleep apnea. Sleep apnea occurs when air is not passed normally in and out of the lungs while sleeping. There are three types

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Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

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Hypoglossal Nerve Stimulation in Three Adults with Down Syndrome and Severe Obstructive Sleep Apnea

Author: Li et al. - The Laryngoscope (2018)

Abstract We present three adults with Down syndrome and obstructive sleep apnea (OSA) treated with hypoglossal nerve stimulation. The average age of these three males was 37.3 years. All patients had

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Seizures

Author: Aashima Ghai, DO - Family Medicine Resident, Adult Down Syndrome Center

Definition: Seizures are waves of abnormal electrical activity in the brain. The brain has multiple nerve cells that create and receive electrical impulses which help the cells communicate with each o

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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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