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Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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Unexplained Regression in Down Syndrome: 35 Cases from an International Down Syndrome Database

Author: Santoro et al. - Genetics in Medicine (2019)

Abstract Purpose:  An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.  Me

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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

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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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Dental Care Guidance for Caregivers of Patients with Down Syndrome

Author: Greg Grillo, DDS and Andrew Jordan, DDM - Dentably

Dental Care Guidance for Caregivers of Patients with Down Syndrome is an article that shares information about common dental problems, finding the right dentist, sedation, appointment preparation, and

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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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Skin Care Handout

Author: Adult Down Syndrome Center

This is a visual support that is based on the Skin Care video featuring Molly and Peter.

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Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.

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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

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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

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How to Shave with an Electric Razor Video

Author: Adult Down Syndrome Center - Video

In this video, Tim and Jim discuss and demonstrate the basic steps for shaving with and cleaning an electric razor.  If this video was helpful, you may be interested in the  Activiti

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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

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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

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Regression in Adolescents and Adults with Down Syndrome

Author: Chicoine & Capone - Chapter in Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract There has been a growing number of clinical case reports of regression in adolescents and adults with Down syndrome who have shown unexpected and severe regression in cognitive and adaptive f

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Tips for Dealing with Dry Skin Video

Author: Adult Down Syndrome Center - Video

Dry skin is more common in people with Down syndrome. In the video below, Mary and June talk about dry skin and tips for managing it. Additional resources can be found in the Skin and Hair section of

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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

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Oral Health and Hygiene Presentation (3/6/2018)

Author: Blase Brown, DDS, MA, Bridget Brown, and UIC Dental Students - Video

The video below is a recording of a presentation on Oral Health and Hygiene hosted by the Adult Down Syndrome Center in March 2018. Self-advocate Bridget Brown describes important aspects of oral hygi

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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

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Bereavement

Author: Down's Syndrome Association - Booklet

People with and without Down syndrome experience grief and sadness when a loved one dies. We have learned from individuals with Down syndrome and their families that grief can be experienced different

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Grief - Ways to Help Support Someone with Down Syndrome Who is Grieving

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

1. Acknowledge and normalize the person’s feelings. It’s important for someone to know that their feelings, whatever they are, are normal and they are not alone. It can help just t

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Grief - 10 Things I Know

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

I’ve heard it said that everyone experiences loss in their lives, although some people have more than others. People with Down syndrome encounter situations involving grief and loss just lik

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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

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Skin Care Video

Author: Adult Down Syndrome Center - Video

In this video, Molly and Peter share information about proper skin care. A corresponding visual handout can be found at this link .

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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

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