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

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Urinary Retention

Author: Agni Vlahos, MD and Brian Chicoine, MD - Family Medicine

Key Points Urinary retention is the build-up of excessive urine in the bladder. It appears to be more common in people with Down syndrome. A common reason for urinary retention in people with Down syn

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Urinary Tract Infections (UTIs)

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

Key Points Urinary tract infections (UTIs) are infections of the urethra, bladder, ureters, and/or kidneys. People with Down syndrome have risk factors for getting a UTI due to issues related to not e

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Urinary Incontinence

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

Key Points Urinary incontinence or urinary "accidents" are more common in people with Down syndrome. There are many potential causes.  The inability to empty the bladder com

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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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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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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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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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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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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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Birth Control in Women with Down Syndrome

Author: Hannah Graham, MD - Adult Down Syndrome Center

Birth control encompasses a wide range of strategies and medications used to prevent pregnancy. Besides preventing pregnancy, some of the medications may be used to treat other common symptoms of mens

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Kidney Function in People with Down Syndrome

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

We frequently see that the lab values of kidney function of people with Down syndrome (DS) we evaluate at our Center are mildly abnormal. The kidney function is slightly decreased compared to what is

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Parents as Primary Sexuality Educators for Adolescents and Adults With Down Syndrome

Author: Frank & Sandman - American Journal of Sexuality Education (2021)

Abstract Limited research exists on the effectiveness of in-person workshops to help parents talk about sexuality. This study utilizes a parallel mixed methods design to examine the impact of the&

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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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Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

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Resource List for Sexual Assault and/or Abuse

Author: Adult Down Syndrome Center

This is a list of resources primarily for individuals in the Chicagoland area.

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Supporting Parents as Sexuality Educators for Individuals with Intellectual Disability

Author: Frank & Sandman - Sexuality and Disability (2019)

Abstract All individuals with intellectual and developmental disabilities (I/DD) have the right to develop and express sexuality in an emotionally satisfying and socially appropriate manner. Questions

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Dating FAQs

Author: Terri Couwenhoven, MS - Sexuality Educator and Clinic Coordinator

In the document linked below, Terri Couwenhoven shares answers to frequently asked questions about dating. Terri is the author of several books including  Teaching Children with Down

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Down Syndrome and Autism

Author: National Down Syndrome Society - Website

The  Down Syndrome and Autism    page on the National Down Syndrome society's website has information and resources about the dual diagnosis of Down syndrome and aut

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Rate of Urinary Retention in Adults with Down Syndrome

Author: Chicoine & Sulo - Journal of the American Board of Family Medicine (2015)

Abstract Purpose:  Down syndrome (DS) is associated with a higher incidence of many medical conditions, but little information regarding urinary retention exists. We assessed the urinary rete

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