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

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Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

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Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

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What is Death?

Author: Adult Down Syndrome Center

This handout talks about death. It describes what it is and how it might make us feel.

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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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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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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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Attention-Deficit/Hyperactivity Disorder in Individuals with Down Syndrome Video

Author: Joseph Pereira - Harvard Medical School, MassGeneral Hospital for Children

The video below was narrated and presented by Joseph Pereira, a 4th year medical student at Harvard Medical School, as part of his work with the MGH Down Syndrome Program . He shares information about

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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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Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

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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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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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Seizures

Author: Aashima Ghai, DO - Family Medicine Resident, Adult Down Syndrome Center

Definition: Seizures are waves of abnormal electrical activity in the brain. The brain has multiple nerve cells that create and receive electrical impulses which help the cells communicate with each o

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Strokes and Down Syndrome

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

Strokes occur when the blood supply to the brain is compromised, which deprives the brain of needed oxygen and glucose. Strokes can be caused by atherosclerotic disease (a disease in which the inside

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Startle Reflex and Myoclonus

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

We were asked a question about increased “startle reflex” in a 30-year-old. Please note: The information below is for educational purposes only and is not intended to serve as a su

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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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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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Neurobehavioral Disorders in Children, Adolescents, and Young Adults with Down Syndrome

Author: Capone et al. - American Journal of Medical Genetics Part C (2006)

Abstract The term dual-diagnosis refers to a person with mental retardation and psychiatric disorder. Most children with Down syndrome (DS) do not have a psychiatric or neurobehavioral disorder. Curre

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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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