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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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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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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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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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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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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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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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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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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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A Center for Adults and Adolescents with Down Syndrome

Author: Chicoine, McGuire, Dominiak, Bilodeau, & Chicoine

An article written to celebrate the 20th anniversary of the opening of the Adult Down Syndrome Center of Advocate Lutheran General Hospital and Advocate Medical Group

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Development of a Clinic for Adults With Down Syndrome

Author: Chicoine, McGuire, Hebein, Gilly

This is an article published in the journal Mental Retardation in 1994.

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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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