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

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Measles and Down Syndrome

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

Key Points Measles is a highly contagious infection. It can have very serious complications. There has been a recent increase in measles infections.  Little is known about measles infection s

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When Things in My Life Change Story

Author: Abby Rowley, LCSW and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

When Things in My Life Change   This visual story discusses how to manage changes that may occur throughout our lives. Additional visuals are available in the  Transitions  

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When Staff Members Leave Story

Author: Abby Rowley, LCSW, and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

When Staff Members Leave   This visual story explains why staff members may leave their job, how we might feel, and how to cope with the change. Additional visuals are available in the&nb

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Moving to a Group Home Story

Author: Michele Mattox, LCSW, LISW-CP - No Limits Counseling & Coaching

The story linked below talks about moving to a group home, including how to deal with new emotions and managing a schedule. Moving to a Group Home     The story was created

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Employment Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking

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College and Vocational Training Resources

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If

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Diagnostic Overshadowing: "All Is Not Down Syndrome"

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

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

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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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Prevalence of Infectious Diseases Among 6078 Individuals with Down Syndrome in the United States

Author: Fitzpatrick et al. - Journal of Patient-Centered Research and Reviews

Abstract A recent disease prevalence study of the largest documented Down syndrome (DS) cohort in the United States strongly suggested significant disparity in general infectious disease conditions am

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Post-Secondary Transition Resources

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

This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are

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Health Care Transition Resources

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

The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care.  G

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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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Trisomy 21 Toolkit for Transitioning to Adult Medical Care

Author: Children's Hospital of Philadelphia - Trisomy 21 Toolkit for Transitioning to Adult Medical Care

The Trisomy 21 Toolkit for Transitioning to Adult Medical Care outlines steps individuals with Down syndrome or other intellectual disabilities can take toward building independence, planning for the

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Influenza

Author: Shelly Verma, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Influenza, or the flu, is caused by the influenza virus. Flu season starts in the fall and peaks between December to March. However, it can last as late as May. There are many different strains of the

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Upper Respiratory Infection - The Common Cold

Author: Jenna Okerblom, DO - Family Medicine Resident, Advocate Lutheran General Hospital

What is it? Most commonly caused by respiratory viruses. Signs and symptoms of the common cold include fever, cough, runny nose, congestion, sore throat, headache, and aches and pains all over. Usuall

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Modeling, Imitation, and Mutual Participation

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

Observing someone demonstrate appropriate behavior, watching a parent or friend model healthy activity, or having a mentor to observe and imitate are all ways we learn a variety of healthy behaviors i

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People First

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

When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of th

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Pandemic (H1N1) 2009 Virus and Down Syndrome Patients

Author: Perez-Padilla et al. - Emerging Infectious Diseases (2010)

Abstract We compared prevalence of hospitalization, endotracheal intubation, and death among case-patients with and without Down syndrome during pandemic (H1N1) 2009 in Mexico. Likelihoods of hospital

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Memorial/Life Celebration

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

I spoke at a patient’s memorial/life celebration a few days ago and I would like to share some of my words. I would like to go back to 1954, the year Don was born. Life expectancy of a perso

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Expectations

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

As we mention in our resource on Two Syndromes , there seem to be four main reasons for the differences noted in the different generations of people with Down syndrome – expectations , life

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Goals

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

As we mention in our resource on Two Syndromes , there have been changes over time that have contributed to some of our families with younger children with Down syndrome not relating to the l

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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 some situations

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Opportunities

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

Over the years, some families have approached us after presentations and reported they couldn’t relate to a story or a point we made. We have found that it was typically a family of a younge

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Two Syndromes

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

Occasionally, after a presentation, someone will come up to Dr. McGuire or me and tell us that they can’t relate to some point that we made. After hearing this a few times, a pattern became

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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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