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

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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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Living with Dementia

Author: Down's Syndrome Scotland

This booklet for families and caregivers of individuals with Down syndrome discusses dementia. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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Let's Talk about Dementia

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains dementia 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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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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Today & Tomorrow: A Guide to Aging with Down Syndrome

Author: Canadian Down Syndrome Society - Resource

The resource linked below is a guidebook on aging from the Canadian Down Syndrome Society. While some of the information and recommendations are specific to Canada, the resource contains helpful infor

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Keeping Connected to Someone with Memory Loss

Author: All Trust Home Care

This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.

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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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Advance Directives - Forms for Illinois Residents

Author: Illinois Department of Public Health - Website

An advance directive is a written statement you prepare that expresses how you want medical decisions made in the future should you not be able to make them yourself. Illinois law allows you

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Diabetes in Adults with Down Syndrome

Author: Chuan-Li Fan, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Diabetes mellitus (DM) is a disease marked by the inability of the body to regulate sugars through insulin. Either the body does not produce enough insulin in the pancreas to help the body absorb suga

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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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Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers

Author: National Down Syndrome Society - Resource

The guidebook linked below was published by the National Down Syndrome Society "to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer

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The Role of Polypharmacy - General Aging in Intellectual and Developmental Disabilities

Author: Julie A. Moran, DO - Geriatrician, Aging and Intellectual/Developmental Disabilities Specialist

The webinar recording below was shared by the Center for Developmental Disabilities Evaluation and Research (CDDER) and the Massachusetts Department of Developmental Services (DDS). The presentation s

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Osteoporosis and Osteopenia: Low Bone Density

Author: Kevin Conley, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Osteoporosis and osteopenia are conditions where bones become more brittle and prone to breaking. Osteopenia is the less severe form and a signal to work on improving bone health. Anyone can develop t

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Hypothyroidism

Author: Ima V. Jonkheer, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Hypothyroidism is a common issue that affects many people with Down syndrome. The thyroid hormones play many important roles in our bodies including influencing our metabolism, production of necessary

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Thyroid, Weight, and Metabolism

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

We were sent a question about thyroid, weight, and metabolism in people with Down syndrome. People with Down syndrome more commonly have hypothyroidism (underactive thyroid), one symptom of which is w

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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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Jenny's Diary: A Resource to Support Conversations about Dementia with People who have an Intellectual Disability

Author: Karen Watchman, Irene Tuffrey-Wijne, & Sam Quinn - University of Stirling

The resource linked below is a free to download booklet and set of postcards aimed at supporting conversations about dementia with people who have an intellectual disability. https://www.learningdisab

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Recurrent Pneumonia

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

Definition of Pneumonia  (by the Mayo Clinic ) Pneumonia is an infection that inflames the air sacs in one or both lungs. The air sacs may fill with fluid or pus, causing cough with phlegm or

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Ask the Doctor: Thyroid Testing

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

Question: Recently, my daughter’s annual thyroid blood work came back as follows: TSH 9.74 (normal: 0.3-5.0), T3 27.8 (normal: 25.0-35.0), Free T4 1.7 (normal: 1.0-4.3), and T4 6.2 (normal:

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Nursing Home Placement

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

Placement of individuals with Down syndrome in nursing homes has been a challenging issue for a number of years. In Illinois, many individuals with intellectual disabilities were sent to live in nursi

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Life Expectancy

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

As we mention in our resource “ Two Syndromes ,” there are four main areas that we see are affecting people with Down syndrome in a positive way. The effect has been so great in so

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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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