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

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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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Hypertension and Hypotension

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

Key Points  The blood pressure of people with Down syndrome tends to be on the lower side. High blood pressure (hypertension) is much less common in people with Down syndrome. Blood pressures

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Cardiovascular Youth for Life: Prevalence of Acquired Cardiovascular Diseases in the Adult Population with Down Syndrome

Author: Wang et al. - The American Journal of Cardiology (2023)

The article linked below is a brief report on the prevalence of acquired cardiovascular diseases and risk factor conditions in adults with Down syndrome.  Keywords:  cardiovascular a

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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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Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus

Author: Dimopoulos et al. - Circulation (2023)

Abstract Cardiovascular disease is a leading cause of morbidity and mortality in individuals with Down syndrome. Congenital heart disease is the most common cardiovascular condition in this group, pre

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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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Acrocyanosis

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

What is acrocyanosis? Acrocyanosis is the bluish discoloration of the extremities (usually the hands and/or feet) due to decreased oxygen being delivered to those areas. The small blood vessels in the

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My ECG/EKG

Author: Adult Down Syndrome Center

This visual explains what happens when you get an ECG or EKG.

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An Introduction to Benefits: Federal and State Programs Available in Illinois

Author: Suzanne Aaron, Information & Outreach Specialist - The Arc of Illinois, Illinois Life Span Program

In January 2022, Suzanne Aaron, an information & outreach specialist from the Illinois Life Span Program of the Arc of Illinois, presented a webinar called "An Introduction t

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When Veins Don't Work

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

What is the vascular system? Our vascular system includes blood vessels (including veins, arteries, and smaller blood vessels) as well as the heart. Arteries carry blood away from the heart towards th

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An Introduction to Developmental Disability Resources, Organizations, and Terms - Webinar Slides

Author: The Arc of Illinois - Presentation

In May 2021, the Arc of Illinois hosted a webinar called, "An Introduction to Developmental Disability Resources, Organizations, and Terms." It was a webinar for family members and c

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Heart Disease in Adults with Down Syndrome Between 1996 and 2016

Author: Fitzpatrick et al. - Journal of the American Board of Family Medicine (2020)

Abstract Purpose:  To describe demographic factors and calculate prevalence of heart disease-related conditions among the adult Down syndrome (DS) sample population and to compare demographic

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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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Vasovagal Syncope (Fainting)

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

What is vasovagal syncope?  Vasovagal syncope is what we commonly think of as fainting in response to emotional upset or pain. Chen-Scarabelli and Scarabelli (2004) define it as “a

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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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Use of Aspirin to Prevent Heart Attacks

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

We were sent a question about the use of aspirin to prevent heart attacks in people with Down syndrome. We have provided some information below. Please note that this information is for educational pu

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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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Down Syndrome, Wolff-Parkinson-White Syndrome, and Bicuspid Aortic Valve

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

We were sent a question about Down syndrome and Wolff-Parkinson-White (WPW) syndrome and Bicuspid Aortic Valve. WPW is a heart condition in which there is an extra electrical pathway in the heart. The

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Down Syndrome and Heart Disease

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

If a 45-year-old man presents to the emergency room with chest pain, what is the big concern? Coronary ischemia (low blood flow to the heart muscle) and possibly myocardial infarction (heart attack).

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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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