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

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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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Healthy Snacks Visual

Author: Mandy Fila, MS, RD, CDCES, LDN - Registered Dietician, Advocate Medical Group

Healthy Snacks Visual     We can make healthy snacks with: Vegetables Fruit Whole grains Protein Healthy fats   We can measure our snacks to make sure we do not eat too much

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Coping with Grief Story

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

The visual below explains how we might feel when someone we care about dies and shares things we can do to help us cope.    Coping with Grief       &nb

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When a Pet Dies Visual

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

This visual explains what happens when a pet dies and how it might make us feel. When a Pet Dies     Other visuals are available in the Grief and Loss section of our Resource Library

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Nutrition and Hydration Apps

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

There are numerous factors to consider when deciding what to eat and drink including nutritional content, dietary restrictions and allergies, convenience, cost, and taste preferences. The apps listed

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Down Syndrome Medical Interest Group-USA (DSMIG-USA) Resources

Author: Down Syndrome Medical Interest Group-USA - Resource List

Are you a health professional looking for information on providing care for individuals with Down syndrome? The Down Syndrome Medical Interest Group-USA  offers several options to support you

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Down Syndrome Podcast Series for Parents, Educators, and Medical Professionals

Author: Down Syndrome Center of Western Pennsylvania - UPMC Children's Hospital of Pittsburgh

The link below goes to a list of podcasts hosted by Kishore Vellody, MD, medical director of the Children's Down Syndrome Center in Pittsburgh. Medical issues of children, teens, and adults wi

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Water Trackers

Author: Adult Down Syndrome Center - Visuals

The visuals below can be used to track how much water we drink each day. There are three versions: 8 oz. cups, 16 oz. water bottles, and 24 oz. water bottles. 8 oz. cups   16 oz. water bottle

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Perspectives on Pain in Down Syndrome

Author: Shaikh et al. - Medicinal Research Reviews (2023)

Abstract Down syndrome (DS) or trisomy 21 is a genetic condition often accompanied by chronic pain caused by congenital abnormalities and/or conditions, such as osteoarthritis, recurrent infections, a

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Weight Management Recommendations for Youth with Down Syndrome: Expert Recommendations

Author: Ptomey et al. - Frontiers in Pediatrics (2023)

Abstract Youth with Down syndrome (DS) have a higher prevalence of overweight and obesity compared to the general youth population. Due to physiological and cognitive differences observed in youth wit

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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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Diabetes and Obesity in Down Syndrome Across the Lifespan: A Retrospective Cohort Study Using U.K. Electronic Health Records

Author: Aslam et al. - Diabetes Care (2022)

Abstract Objective:  Down syndrome (DS) is the most common form of chromosomal trisomy. Genetic factors in DS may increase the risk for diabetes. This study aimed to determine whether DS is a

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Drinking a Glass of Water Visual

Author: Katie Frank, PhD, OTR/L - Occupational Therapist

We often encourage individuals with Down syndrome who come to our clinic to drink more water. This recommendation can be interpreted in different ways. One individual with Down syndrome who heard this

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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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Water Tracker

Author: Adult Down Syndrome Center

This handout can be used to mark off how much water you drink each day.

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Guide to Healthy Eating

Author: Adult Down Syndrome Center

This handout uses a stoplight to help individuals with Down syndrome know what foods to eat everyday (green), sometimes (yellow), and on special occasions (red).

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Guide to Healthy Drinking

Author: Adult Down Syndrome Center

This handout uses a stoplight to help individuals with Down syndrome know what drinks to consume everyday (green), sometimes (yellow), and on special occasions (red).

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Healthy Pace for Eating Handout

Author: Adult Down Syndrome Center

This visual shows steps to take to have a healthy pace for eating. Take a bite, put the fork down, chew 5-10 times, swallow the food, take a small drink, pick up your fork and start all over.

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Prevalence of Common Disease Conditions in a Large Cohort of Individuals with Down Syndrome in the United States

Author: Chicoine et al. - Journal of Patient-Centered Research and Reviews (2021)

Abstract Purpose:  Given the current life expectancy and number of individuals living with Down syndrome (DS), it is important to learn common occurrences of disease conditions across the dev

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Medical Care of Adults with Down Syndrome: A Clinical Guideline

Author: Tsou et al. - JAMA (2020)

Abstract Importance:  Down syndrome is the most common chromosomal condition, and average life expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite the u

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Down Syndrome: Review Article

Author: Marilyn Bull, MD - The New England Journal of Medicine (2020)

Abstract Down syndrome, also called Down’s syndrome (DS), is the most common chromosomal condition associated with intellectual disability and is characterized by a variety of additional cli

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Challenges of Pediatric Disease in Adulthood

Author: Baumgardner & Chicoine - Journal of Patient-Centered Research and Reviews (2020)

Abstract Some chronic diseases - such as the rare bone disease X-linked hypophosphatemia, the impetus for a study reported within Volume 7, Issue 2 of the  Journal of Patient-Centered Researc

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Co-Occurring Medical Conditions in Adults with Down Syndrome. Part II.

Author: Capone et al. - American Journal of Medical Genetics Part A (2020)

Abstract Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. Many of these conditions are of public health importance wit

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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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