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

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Overview and Types of Respite

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in

Down Syndrome Medical Care Centers

Author: Global Down Syndrome Foundation - Resource

The Global Down Syndrome Foundation has compiled a list of medical care centers that specialize in treating patients with Down syndrome in the United States. It is organized by state. The list can be

Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

Health Care Resources for Adults with Down Syndrome

Author: Down Syndrome Medical Interest Group - DSMIG

The DSMIG Health Care Resources for Adults with Down Syndrome page linked below contains practice guidelines, reviews, and research articles on adult health, health utilization, morbidity, and mortali

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

Tips for Going Up and Down Stairs Safely

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

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

Tips for Communicating with a Patient with Intellectual Disabilities

Author: Center for Inclusive Health - Special Olympics

The resource linked below shares tips for communicating with patients with intellectual disabilities. As the tips indicate, the most important thing to remember is to communicate with the patient firs

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

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.

Seborrheic Dermatitis

Author: Pathik Patel, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Skin disorders are common in individuals with Down syndrome. Seborrheic dermatitis is one of the more common skin problems. It is a chronic, relapsing form of dermatitis (inflammation of the skin) cha

The Pattern of Malignancies in Down Syndrome and Its Potential Context with the Immune System

Author: Satge & Seidel - Frontiers in Immunology (2018)

Abstract The immune surveillance theory of cancer posits that the body's immune system detects and destroys randomly occurring malignant cells. This theory is based on the observation of the i

Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unreco

Alopecia

Author: Naomi Roman, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Several autoimmune diseases are more prevalent in people with Down syndrome (DS) including alopecia areata, a chronic immunological disorder that targets hair follicles and causes hair loss. When a pe

Steps to Accessing Adult Services and Supports

Author: Grace O’Connor and Ann Garcia - Patient Advocates, Adult Down Syndrome Center

While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the

Ringworm, Athlete's Foot, and Jock Itch

Author: Asma Sayeed, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Ringworm, athlete’s foot and jock itch are fungal infections that are more common among individuals with Down syndrome. There are a variety of likely reasons for that including a tendency to

Mammograms

Author: Sravanthi Paritala, MD - Family Medicine Resident, Advocate Lutheran General Hospital

What is a mammogram? A mammogram is a special type of x-ray that looks for breast cancer, which is the most common cancer among women. The United States Preventive Services Task Force (USPSTF) recomme

Family Care Toolkit

Author: National Down Syndrome Congress - Resource

The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath

How I Learn

Author: GiGi's Playhouse - Video and Handout

The link below goes to a resource from Gigi's Playhouse called "How I Learn." It includes a video and handout that share information about how individuals with Down syndrome

Attending a Summer Camp

Author: Shane Sexton, LCSW - Social Worker, Adult Down Syndrome Center

It may be hard to believe when many of us are still shivering in our winter coats, but summer is just around the corner! Summer is not only a time to soak up sunshine and enjoy family vacations but a

Estimation of the Number of People with Down Syndrome in the United States

Author: de Graaf et al. - Genetics in Medicine (2016)

Abstract Purpose:  An accurate accounting of persons with Down syndrome (DS) has remained elusive because no population-based registries exist in the United States. The purpose of this study

Low Risk of Solid Tumors in Persons with Down Syndrome

Author: Hasle et al. - Genetics in Medicine (2016)

Abstract Purpose:  The aim of this study was to investigate cancer incidence in a large cohort of persons with Down syndrome.  Methods:  Down syndrome was identified from th

Morbidity and Medication in a Large Population of Individuals with Down Syndrome Compared to the General Population

Author: Alexander et al. - Developmental Medicine and Child Neurology (2015)

Abstract Aim: The aim of this study was to describe the incidence of morbidities and the prevalence of medical prescriptions in a large Down syndrome population. Me

Breast Cancer Screening for Women with Down Syndrome

Author: Chicoine et al. - Intellectual and Developmental Disabilities (2015)

Abstract This study examined mammogram reports of women with Down syndrome (DS) treated in the largest medical facility specifically serving adults with DS in the United States. Records of 684 women a

Supporting a Happy, Healthy Adolescence for Young People with Down Syndrome and Other Intellectual Disabilities: Recommendations for Clinicians

Author: Baumer & Davidson - Current Opinion in Pediatrics (2014)

Abstract Purpose of Review:  To review clinical updates and current healthcare issues for adolescents with Down syndrome and intellectual disabilities, including behavioral, social, and emoti

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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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