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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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Resources for Siblings

Author: Adult Down Syndrome Center - Resource List

The resources in the Families and Caregivers  section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down

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Emergency Preparedness Resources

Author: Adult Down Syndrome Center - Resource List

Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit

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Health Benefits of Chores

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

Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ

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Resources on Developing Greater Independence

Author: Adult Down Syndrome Center - Resource List

Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit

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Keratoconus in People with Down Syndrome

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

We received a question about treatment of keratoconus in people with Down syndrome.  What is keratoconus? Keratoconus is an eye condition in which the cornea (the clear part in the front of t

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Healthcare Experiences of Patients With Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race

Author: Krell et al. - American Journal of Medical Genetics Part A (2022)

Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpos

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Bias in the Health Care System: Advocating for People with Down Syndrome Webinar (10/19/2022)

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

Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi

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People Living with Down Syndrome in the USA, Europe, Australia, and New Zealand: Births and Population

Author: deGraff, Buckley, and Skotko - Fact Sheets

The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe.  USA Fact Sheet   Last updated Novemb

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Overview and Types of Respite

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in

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Respite Organizations and Providers

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

The list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included: In-Hom

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Adult Sibling Toolkit

Author: National Down Syndrome Congress - Resource

The Adult Sibling Toolkit from the National Down Syndrome Congress is a tool for adult siblings who are preparing to become more involved in the support and care of their loved ones with Down syndrome

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Down Syndrome EyeWiki

Author: American Academy of Ophthalmology - Eye Encyclopedia

EyeWiki is an Eye Encyclopedia developed by the American Academy of Ophthalmology with content contributed by ophthalmologists (eye physicians and surgeons). There is a Down syndrome page wit

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Prevalence of Infectious Diseases Among 6078 Individuals with Down Syndrome in the United States

Author: Fitzpatrick et al. - Journal of Patient-Centered Research and Reviews

Abstract A recent disease prevalence study of the largest documented Down syndrome (DS) cohort in the United States strongly suggested significant disparity in general infectious disease conditions am

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Traveling the Road Towards Independence Webinar Recording (12/14/2021)

Author: Lina Patel, PsyD - Down Syndrome Association of Delaware

On December 14, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Traveling the Road Towards Independence." The presenter was Lina Patel, PsyD. View recording

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Surgery to Correct Eye Crossing (Strabismus)

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

We were asked about recurrence of strabismus that had been corrected by surgery in childhood. Strabismus is crossing of the eyes. The eyes of an individual with strabismus are not lined up properly an

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Gout in People with Down Syndrome

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

Gout is more common in people with Down syndrome (DS) (as indicated by the studies at this link  and this link ). Gout is a type of inflammatory arthritis caused by

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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

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Family Care Toolkit

Author: National Down Syndrome Congress - Resource

The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath

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Influenza

Author: Shelly Verma, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Influenza, or the flu, is caused by the influenza virus. Flu season starts in the fall and peaks between December to March. However, it can last as late as May. There are many different strains of the

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Upper Respiratory Infection - The Common Cold

Author: Jenna Okerblom, DO - Family Medicine Resident, Advocate Lutheran General Hospital

What is it? Most commonly caused by respiratory viruses. Signs and symptoms of the common cold include fever, cough, runny nose, congestion, sore throat, headache, and aches and pains all over. Usuall

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Ten Tips for Surviving the Holidays

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

It’s holiday time and many people are busy decorating, baking cookies, shopping, and planning family celebrations. There are often significant changes in routine and breaks from school or da

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Estimation of the Number of People with Down Syndrome in the United States

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

Abstract Purpose:  An accurate accounting of persons with Down syndrome (DS) has remained elusive because no population-based registries exist in the United States. The purpose of this study

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Pandemic (H1N1) 2009 Virus and Down Syndrome Patients

Author: Perez-Padilla et al. - Emerging Infectious Diseases (2010)

Abstract We compared prevalence of hospitalization, endotracheal intubation, and death among case-patients with and without Down syndrome during pandemic (H1N1) 2009 in Mexico. Likelihoods of hospital

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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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