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

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Incidence and Clinical Outcomes of Pneumonia in Persons with Down Syndrome in the United States

Author: Janoff et al. - Vaccine (2023)

Abstract Background:  Persons with Down syndrome (DS) experience an increased risk of pneumonia. We determined the incidence and outcomes of pneumonia and relationship to underlying comorbidi

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Staff Turnover

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

For people living in a group home or participating in day programs, the staff members often become like family. This is especially true if the person does not have other family involved in his life bu

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

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

We are in the process of updating this resource. Please see the CDC website for the current recommendations. UPDATED May 10, 2023 The physicians of the Adult Down Syndrome Center recommend that indivi

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Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below! There are ideas for arts and crafts , cooking , education/learning , fitness and physical

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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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Getting an X-Ray Visual

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

This Getting an X-Ray visual  explains what happens when we get an x-ray. This visual can help individuals with Down syndrome know what to expect when going for an x-ray.  A

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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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Global Medical Care Guidelines for Adults with Down Syndrome

Author: Medical Care Guidelines for Adults with Down Syndrome Workgroup - Global Down Syndrome Foundation

On October 20, 2020, the Global Medical Care Guidelines for Adults with Down Syndrome were published in the Journal of the American Medical Association (JAMA)  in an article called "

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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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Long COVID in Adults with Intellectual Disabilities

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

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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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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Recommendations for Treatment of Mild to Moderate COVID-19 Infection

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

We have only seen or heard of a few cases of severe COVID-19 infection in our patients with Down syndrome who have received COVID-19 vaccines. Our experience has been consistent with the data

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Health Supervision for Children and Adolescents with Down Syndrome

Author: Bull et al. (2022) - Pediatrics (American Academy of Pediatrics Publication)

In April 2022, a clinical report was published in  Pediatrics , a publication of the American Academy of Pediatrics. These pediatric guidelines are "designed to assist the p

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Ableism at the Bedside: People with Intellectual Disabilities and COVID-19

Author: Chicoine et al. - The Journal of the American Board of Family Medicine (2022)

Abstract People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comor

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COVID-19 Vaccination of Individuals with Down Syndrome - Data from the Trisomy 21 Research Society Survey

Author: Huls et al. - Vaccines (2022)

Abstract Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS

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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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Impact of the COVID-19 Pandemic on Daily Life, Mood, and Behavior of Adults with Down Syndrome

Author: Hartley et al. - Disability and Health Journal (2022)

Abstract Background:  The Down syndrome population has been disproportionately affected by Coronavirus 2019 (COVID-19) in terms of experiencing severe illness and death. Soc

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Low Heart Rate and Blood Pressure

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

Blood pressure and heart rates/pulses that are on the lower end of normal or even a little lower than normal are common findings in people with Down syndrome (see this article on hypertension

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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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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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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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