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

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Connective Tissue and Down Syndrome

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

Key Points Connective tissue is the tissue that helps hold our bodies together. Connective tissue is different in people with Down syndrome compared to others.  People with Down syndrome have

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Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

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How to Plan a Date

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

There are many things to think about when planning a date such as who you will ask, when and where you will go, how much it will cost, and how you will get to and from the date. The handouts below can

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

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Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

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Story About Getting My Period

Author: Katie Frank, PhD, OTR/L

This visual explains what happens when a woman gets her period.

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Story About How to Change My Tampon

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a tampon when a woman has her period.

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Story About How to Change My Period Panties

Author: Katie Frank, PhD, OTR/L

This visual explains how to change period panties when a woman has her period.

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Story About When to Change My Menstrual Hygiene Product

Author: Katie Frank, PhD, OTR/L

This visual explains that women need to change their pad, tampon, or period panties throughout the day when they have their period.

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Story About How to Change My Pad

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a pad when a woman has her period.

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Personal Hygiene Chart

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

The Personal Hygiene Chart linked below can help us keep track of when we complete hygiene tasks such as taking a shower, brushing our teeth, and caring for our nails. Not all hygien

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Overpronation

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

What is overpronation of the ankle? In short, when we walk, typically the outside of our heel strikes the ground first and then the rest of our foot rolls to come in contact with the ground. Then our

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Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

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Supporting Healthy Sexuality for Individuals with Down Syndrome Webinar Recording (11/16/2022)

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

This is a recording of a webinar presented by Katie Frank, PhD, OTR/L of the Adult Down Syndrome Center in Park Ridge, IL. We know that having healthy relationships benefits the physical, mental, and

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Planet Puberty

Author: Family Planning NSW - Digital Resource (Australia)

Planet Puberty is a resource designed to guide parents of individuals with intellectual disabilities through their child's puberty journey. Topics include the body, feeling good, relationships

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Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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Development of Atlantoaxial Instability in an Older Person with Down Syndrome

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

The parent of a 47-year-old man with Down syndrome submitted the following question: Can a person with Down syndrome develop atlantoaxial instability in adulthood? My son is 47. When he was younger, X

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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

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Trampolines

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

We periodically get asked about the use of trampolines by people with Down syndrome. Trampolines cause many injuries to both children and adults. The American Academy of Orthopaedic Surgeons

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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

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Supporting Healthy Sexuality for Your Loved One with Down Syndrome Webinar Recording (6/15/2022)

Author: Katie Frank, PhD, OTR/L - North Carolina Down Syndrome Virtual Speaker Series

On June 15, 2022, the North Carolina Down Syndrome Alliance hosted a webinar called "Supporting Healthy Sexuality for Your Loved One with Down Syndrome" presented by Katie Frank, PhD

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Bunions in People with Down Syndrome

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

A bunion (also known as hallux valgus) is a bony projection or bump that forms at the base of the big toe. If the joint at the base of the big toe is subjected to great pressure while walking, the big

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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

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Story About Body Changes for Girls

Author: Katie Frank, PhD, OTR/L

This visual handout explains how our bodies change as we get older.

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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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