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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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Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, Hannah Graham, MD, and Farah Chaus, MD - Adult Down Syndrome Center

UPDATED January 18, 2024 The physicians of the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follow the recommenda

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Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

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Prostate Cancer Screening in Men with Down Syndrome

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

Key Points on Prostate Cancer Prostate cancer is one of the most common types of cancer in men. There is uncertainty about the potential benefits and risks of prostate cancer screening for men.&nb

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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

Key Points Breast cancer is less common in women with Down syndrome compared to women without Down syndrome. Currently, the recommendations for breast cancer screening are the same for women with and

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Dysgerminomas in Women with Down Syndrome

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

Key Points A dysgerminoma is a type of cancer that usually occurs in a woman's ovary. There is limited research on dysgerminomas in women with Down syndrome. It is not clear if dysgerminomas a

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

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Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

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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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Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

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Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

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Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

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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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Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

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Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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Pneumococcal Vaccines

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

What is pneumococcal disease?  Pneumococcal disease is caused by  Streptococcus pneumoniae  bacteria. It is a leading cause of vaccine-preventable illness and death in the U

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Immune Response to COVID-19 Vaccines

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

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

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Testicular Cancer

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

Key Points Testicular cancer is more common in men with Down syndrome compared to men without Down syndrome. Health care providers can check for testicular cancer during an annual physical exam. Testi

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Safety and Long-Term Immunogenicity of BNT162b2 Vaccine in Individuals with Down Syndrome

Author: Valentini et al. - Journal of Clinical Medicine (2022)

Abstract We aimed to evaluate the safety and immunogenicity of the BNT162b2 vaccine in young people with Down syndrome (DS), and to compare their humoral immune response with those of the healthy cont

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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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