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

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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

Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

Behavior Changes in Adolescents and Adults with Down Syndrome Webinar Recording (4/28/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on April 28, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

Temperature Regulation in People with Down Syndrome

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

We were sent a question about the typical body temperature of people with Down syndrome and how they regulate their body temperature.  Body Temperature of People with Down Syndrome Our review

Refusal to Eat Solid Foods

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

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

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

Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether m

The Pattern of Malignancies in Down Syndrome and Its Potential Context with the Immune System

Author: Satge & Seidel - Frontiers in Immunology (2018)

Abstract The immune surveillance theory of cancer posits that the body's immune system detects and destroys randomly occurring malignant cells. This theory is based on the observation of the i

Vision in Adults with Down Syndrome

Author: Lalithasree Chintam, MD - Family Medicine Resident, Advocate Lutheran General Hospital

People with Down syndrome (DS) experience many of the common eye problems that people without DS experience. Some people with DS experience these common eye problems more frequently and/or at an earli

Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unreco

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

Chronic Cough in Adults with Down Syndrome

Author: Ravi Shah, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Definition: Chronic cough is defined as any cough that lasts greater than three weeks. It is a common condition in adults with Down syndrome. Reasons that chronic cough have a higher frequency in peop

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

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

Diabetes in Adults with Down Syndrome

Author: Chuan-Li Fan, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Diabetes mellitus (DM) is a disease marked by the inability of the body to regulate sugars through insulin. Either the body does not produce enough insulin in the pancreas to help the body absorb suga

Mammograms

Author: Sravanthi Paritala, MD - Family Medicine Resident, Advocate Lutheran General Hospital

What is a mammogram? A mammogram is a special type of x-ray that looks for breast cancer, which is the most common cancer among women. The United States Preventive Services Task Force (USPSTF) recomme

The Role of Polypharmacy - General Aging in Intellectual and Developmental Disabilities

Author: Julie A. Moran, DO - Geriatrician, Aging and Intellectual/Developmental Disabilities Specialist

The webinar recording below was shared by the Center for Developmental Disabilities Evaluation and Research (CDDER) and the Massachusetts Department of Developmental Services (DDS). The presentation s

Hypothyroidism

Author: Ima V. Jonkheer, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Hypothyroidism is a common issue that affects many people with Down syndrome. The thyroid hormones play many important roles in our bodies including influencing our metabolism, production of necessary

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome

Author: de Knegt et al. - Pain Medicine (2017)

Abstract Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants’ report) and self-reported pain experience in adults with Down syndrome

Thyroid, Weight, and Metabolism

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

We were sent a question about thyroid, weight, and metabolism in people with Down syndrome. People with Down syndrome more commonly have hypothyroidism (underactive thyroid), one symptom of which is w

Reduced Pain Responses in Individuals with Down Syndrome

Author: Lisa Dahl, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Individuals with Down syndrome have reduced and delayed pain responses. They are not insensitive to pain, but their expression is delayed and less precise. It is hard to tell if there is a decreased a

Low Risk of Solid Tumors in Persons with Down Syndrome

Author: Hasle et al. - Genetics in Medicine (2016)

Abstract Purpose:  The aim of this study was to investigate cancer incidence in a large cohort of persons with Down syndrome.  Methods:  Down syndrome was identified from th

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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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