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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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Connective Tissue and Down Syndrome

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

Key Points Connective tissue is the tissue that helps hold our bodies together. Connective tissue is different in people with Down syndrome compared to others.  People with Down syndrome have

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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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Overpronation

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

What is overpronation of the ankle? In short, when we walk, typically the outside of our heel strikes the ground first and then the rest of our foot rolls to come in contact with the ground. Then our

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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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Development of Atlantoaxial Instability in an Older Person with Down Syndrome

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

The parent of a 47-year-old man with Down syndrome submitted the following question: Can a person with Down syndrome develop atlantoaxial instability in adulthood? My son is 47. When he was younger, X

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Trampolines

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

We periodically get asked about the use of trampolines by people with Down syndrome. Trampolines cause many injuries to both children and adults. The American Academy of Orthopaedic Surgeons

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Bunions in People with Down Syndrome

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

A bunion (also known as hallux valgus) is a bony projection or bump that forms at the base of the big toe. If the joint at the base of the big toe is subjected to great pressure while walking, the big

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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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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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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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Flat Feet in People with Down Syndrome

Author: Lorri Riley, DPM - j1 insoles

The website at the link below discusses flat feet and Down syndrome. The website also contains information about j1 insoles, a line of medical grade insoles for adults and children that are less expen

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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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Sport Preparticipation Screening for Asymptomatic Atlantoaxial Instability in Patients with Down Syndrome

Author: Tomlinson et al. - Clinical Journal of Sport Medicine (2018)

Abstract Down syndrome (DS) is a clinical syndrome comprising typical facial features and various physical and intellectual disabilities due to extra genetic material on chromosome 21, with one in eve

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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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Ligamentous Laxity

Author: Peter Waller, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Ligaments are bands of fibrous connective tissue in our body that connect one bone to another bone and provide support to our joints. In people with Down syndrome, these ligaments tend to be loose lea

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Atlantoaxial Instability Screening

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

Atlantoaxial instability (AAI) is subluxation or slippage of the first neck vertebrae in relation to the second. It is more common in people with Down syndrome (DS) and there are unique screening cons

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Knee Pain from Patellofemoral Syndrome

Author: Julia Howell, MD - Family Medicine Resident, Advocate Lutheran General Hospital

People with Down syndrome can often have laxity, or looseness, of the ligaments that support joints. The knee is no exception. The patella, or knee cap, attaches to the muscles of the upper and lower

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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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