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Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective

Author: Chicoine & Kirschner - Perspectives in Biology and Medicine (2022)

Abstract The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and

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Taking Charge of My Appointment

Author: Adult Down Syndrome Center

Individuals with Down syndrome can use this handout before, during, and after health appointments to help them advocate for their health.

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Testicular Cancer

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

While many solid tumor cancers are  less  common in people with Down syndrome compared to people without Down syndrome, testicular cancer is one type of solid tumor cancer that is&am

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Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Breast cancer screening recommendations have varied over time and continue to vary. Organizations have different recommendations for when women should start being screened for breast cancer and how of

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Tips for Successful Blood Draws

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

Do you or does a family member or friend with Down syndrome dread getting blood drawn? Here are some tips to help with blood draws:  Make sure to be hydrated ! This will help the phl

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Template for Writing Goals

Author: Adult Down Syndrome Center

This handout explains how to and provides a template for writing a goal and making a plan to achieve the goal.

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Overview of Writing Goals

Author: Adult Down Syndrome Center

This handout shares information about how to write goals.

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Supporting People with Down Syndrome in Living a Healthy Lifestyle Webinar Recording (5/12/2021)

Author: Katie Frank, PhD, OTR/L and Laura Chicoine, BA - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Katie Frank, PhD, OTR/L and Laura Chicoine, BA on May 12, 2021. Dr. Frank is the occupational therapist at the Adult Down Syndrome Center and L

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Dysgerminomas in Women with Down Syndrome

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

We received a request for information on dysgerminomas in women with Down syndrome. Dysgerminomas are germ cell tumors that typically occur in the ovary. Testicular cancer is the comparable cancer in

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Prostate Cancer Screening in Men with Down Syndrome

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

Should men with Down syndrome (DS) undergo prostate specific antigen (PSA) blood testing for prostate cancer screening? The United States Preventive Services Task Force (USPSTF) recommends the followi

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Pneumonia and Respiratory Infections in Down Syndrome: A Scoping Review of the Literature

Author: Santoro et al. - American Journal of Medical Genetics Part A (2020)

Abstract Pneumonia and respiratory infections impact infants and children with Down syndrome; pneumonia is a leading cause of mortality in adults with Down syndrome. We aimed to review the literature

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Healthy Lifestyle Activity Book

Author: Adult Down Syndrome Center

Complete activities related to five areas of health and wellness - nutrition, hydration, sleep, exercise, and stress management.

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How to Wash Your Hands Visual

Author: Adult Down Syndrome Center

This visual handout corresponds to our video on how to wash your hands. It shows the steps for handwashing.

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How to Wash Your Hands Video

Author: Adult Down Syndrome Center - Video

In this video below, Jeff demonstrates how we should wash our hands. As Jeff explains, handwashing is an important thing we can do to keep ourselves healthy! A corresponding visual handout can be foun

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Staying Hydrated

Author: Adult Down Syndrome Center

This handout explains why it is important to drink water and stay hydrated.

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Drinking Water

Author: Adult Down Syndrome Center

This handout explains how much water we should drink each day.

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Erin's Tips for Living a Healthy Lifestyle Video

Author: Adult Down Syndrome Center - Video

In the video below, Erin shares tips for living a healthy lifestyle. As Erin says, "Living a healthy lifestyle can be really hard," but her tips can help make it easier! 

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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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My Health Passport

Author: Florida Center for Inclusive Communities

This health passport can be filled out by individuals with Down syndrome and their families to share information with health care professionals about how they can best support the individual.

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Recreational and Social Opportunities

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

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

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Alternatives to Workshops

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

Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga

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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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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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