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

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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? Many organizations - including the Adult Down Syndrome Center - have compiled lists of ideas. Please see the links below!  Adult Down Syndrome Center 21 Healthy Ways to Celebrate WDSD (they apply all year long!) -  l

Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Recommendations for breast cancer screening have varied over time and continue to vary. Organizations have different recommendations for when women should start being screened for breast cancer and how often they should be screened. Breast cancer is most commonly screened for with a mammogram, or an

Celebrating Holidays During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

We have received several questions about how to celebrate holidays safely during the COVID-19 pandemic. Like many of our answers, there isn't a one-size-fits-all solution. Many factors need to be considered when deciding how and with whom to celebrate. While the holidays will certainly look

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 unrecognized symptomatic colon cancer). If there is an abnormality or symptom, we refer patients for colon

COVID and Down Syndrome Webinar

Author: Dr. Brian Chicoine and Dr. Andre Strydom - Matthew Foundation Webinar

On January 8, 2021, Drs. Brian Chicoine and Andre Strydom presented a webinar hosted by the Matthew Foundation in collaboration with the Stanford Down Syndrome Research Center. They provided an update on the Trisomy 21 Research Society COVID and Down Syndrome Survey and discussed the DSMIG-USA Vacci

COVID-19 & Down Syndrome Resource

Author: National Consortium - DSMIG-USA, Global, LuMind IDSC, NDSC, NDSS, NTG

On March 1, 2021, a new resource on COVID-19 and Down syndrome was completed by a national consortium of organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), Na

COVID-19 Booster Shots and Third Doses

Author: Adult Down Syndrome Center - Resource

UPDATED 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & Johnson COVID-19 vaccines. The statement can be found at this link . 10/15/2021 : According to the CDC , you can get a flu vaccine at the same time you get a COVID-19 vaccine, including a COVID-19

COVID-19 Resources

Author: Adult Down Syndrome Center - Resource List

Many organizations are compiling COVID-19 resource lists. We have included links to some of them below.  The amount of information about COVID-19 can be overwhelming and can cause anxiety and stress. Our mental health is just as important as our physical health during this time. We recommen

COVID-19 Testing Sites

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 exposed to COVID-19 previously and developed some level of immunity to COVID-19 .  We have recei

COVID-19 Vaccine Information

Author: Adult Down Syndrome Center - Resource List

General Vaccine Information Centers for Disease Control and Prevention (CDC) Pfizer-BioNTech COVID-19 Vaccine   Moderna COVID-19 Vaccine Janssen (Johnson & Johnson) COVID-19 Vaccine National Association of Councils on Developmental Disabilities (NACDD) Get Out the Vaccine  

Dental Care During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

The information below was shared on August 25, 2020. For the most up-to-date information, please see the website of the Centers for Disease Control and Prevention (CDC) at this link   and/or the Mouth Healthy website of the American Dental Association at this link . Dental disease, especial

DSMIG Response to CDC Mask Recommendations

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

In May 2021, the Down Syndrome Medical Interest Group shared a position statement titled "Response to Centers for Disease Control Mask Recommendations." This document shares information that people with Down syndrome and their families may want to consider in ligh

DSMIG-USA IDD COVID-19 Vaccination Position Statement

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement was updated on January 5, 2021 and again on May 28, 2021.     DSMIG-USA recommends the COVID-19 vaccine for individuals with Dow

Dysgerminomas in Women with Down Syndrome

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

We received a request for information on dysgerminomas in women with Down syndrome. Dysgerminomas are germ cell tumors that typically occur in the ovary. Testicular cancer is the comparable cancer in men with Down syndrome. Testicular cancer has been found to be more common in men with Down syndrome

Going to Public Places During the COVID-19 Pandemic

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

Many states and communities have lifted stay-at-home restrictions. We have received questions about whether it is safe to resume certain activities such as going to restaurants, getting haircuts, traveling, and more. Unfortunately, there is no "one-size-fits-all" answer. It depends

Healthy Aging Toolkit: Promoting Healthy Aging While You Are Stuck at Home

Author: Mary Stephens, MD & E. Adel Herge, OTD, OTR/L, FAOTA

This list of resources for promoting healthy aging while you are stuck at home was developed by Mary Stephens, MD and E. Adel Herge, OTD, OTR/L, FAOTA.

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 exposed to COVID-19 previously and developed some level of immunity to COVID-19.  A common metho

Hospital Visitor Policies During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal complaints regarding "no visitor" policies at hospitals, outpatient clinics, and outpatient sur

Immune Response to COVID-19 Vaccines

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

We received a question about whether the immune systems of people with Down syndrome produce antibodies in response to COVID-19 vaccines. I have shared the response I sent below.  The immune system's response to any vaccine is key to preventing infections. However, some people with

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 unfamiliar with the individual and their health history and/or a family member or caregiver is unable to b

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

UPDATED 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & Johnson COVID-19 vaccines. The statement can be found at this link .  9/28/2021 On September 24, 2021, the Centers for Disease Control and Prevention (CDC) updated the recommendations for

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) recommends that women get mammograms every other year beginning at age 50. What are the benefits? Early det

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. Departments of the federal government and some state governments have responded by issuing bulletins and

Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

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

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight. The man had gotten a COVID-19 vaccine about one month before his symptoms started. His family wonder

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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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