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

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Pneumococcal Vaccines

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

April 2022: We updated this resource to include information about Prevnar 20 (pneumococcal conjugate vaccine, PCV20). What is pneumococcal disease?  Pneumococcal disease is caused by

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

Helping Children and Adults with Down Syndrome to Cope with Grief Webinar Recording (7/28/2021)

Author: Rose Reif, MS, LCMHC, CRC, BC-TMH - Down Syndrome Association of Delaware

On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,

Epilepsy in Down Syndrome: A Highly Prevalent Comorbidity

Author: Altuna, Gimenez, & Fortea - Journal of Clinical Medicine (2021)

Abstract Individuals with Down syndrome (DS) have an increased risk for epilepsy during the whole lifespan, but especially after age 40 years. The increase in the number of individuals with DS living

Stroke and Vascular Disease in Down Syndrome Webinar Recording

Author: Jonathan Santoro, MD - Director of Neuroimmunology and Demyelinating Disorders Program at Children's Hospital Los Angeles, Assistant Professor of Neurology at the Keck School of Medicine at the University of Southern California

The webinar below was hosted by the Down Syndrome Association of Los Angeles. The topic was "Stroke and Vascular Disease in Down Syndrome: How to Identify and Prevent." The presenter

Tourette Syndrome and Down Syndrome

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

Tourette syndrome (TS) is a hereditary, chronic neuromuscular condition consisting of motor and vocal tics. Tics are sudden, involuntary, brief, repetitive movements and vocalizations.  Motor

Flu Vaccine Information for People with Down Syndrome

Author: Daniela Estrada Gomez, MD - Down Syndrome Program of Mass General Hospital for Children

Individuals with and without Down syndrome can experience harmful symptoms and complications from the flu. The best way to avoid catching the flu is to get the flu vaccine each year. To learn more abo

What is Death?

Author: Adult Down Syndrome Center

This handout talks about death. It describes what it is and how it might make us feel.

Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles, Takahashi, Muckerman, Nowell, Ithman - Neuropsychiatric Disease and Treatment - 2019

Abstract Objective:  The goal is to expand our knowledge of catatonia occurring in adolescents and young adults with Down syndrome (DS) by describing the first prospective, consecutive, well-

Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.

Don't Spread Germs!

Author: Abdul Bilal Khan, MD

This visual shares tips for stopping the spread of germs that make you and others sick.

Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

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

Seizures

Author: Aashima Ghai, DO - Family Medicine Resident, Adult Down Syndrome Center

Definition: Seizures are waves of abnormal electrical activity in the brain. The brain has multiple nerve cells that create and receive electrical impulses which help the cells communicate with each o

Psychogenic Non-Epileptic Seizures or Fake Seizures

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

We periodically get asked questions about “fake seizures.” They have also been called “pseudo-seizures” but are now more accurately called non-epileptic seizure

Strokes and Down Syndrome

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

Strokes occur when the blood supply to the brain is compromised, which deprives the brain of needed oxygen and glucose. Strokes can be caused by atherosclerotic disease (a disease in which the inside

Startle Reflex and Myoclonus

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

We were asked a question about increased “startle reflex” in a 30-year-old. Please note: The information below is for educational purposes only and is not intended to serve as a su

Bereavement

Author: Down's Syndrome Association - Booklet

People with and without Down syndrome experience grief and sadness when a loved one dies. We have learned from individuals with Down syndrome and their families that grief can be experienced different

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

Grief - Ways to Help Support Someone with Down Syndrome Who is Grieving

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

Ways to Help Support Someone with Down Syndrome Who is Grieving: Acknowledge and normalize the person’s feelings. It’s important for someone to know that their feelings, whatever t

Grief - 10 Things I Know

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

I’ve heard it said that everyone experiences loss in their lives, although some people have more than others. People with Down syndrome encounter situations involving grief and loss just lik

Neurobehavioral Disorders in Children, Adolescents, and Young Adults with Down Syndrome

Author: Capone et al. - American Journal of Medical Genetics Part C (2006)

Abstract: The term dual-diagnosis refers to a person with mental retardation and psychiatric disorder. Most children with Down syndrome (DS) do not have a psychiatric or neurobehavioral disorder. Curr

Shingles Vaccine

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

Shingles is a painful skin rash caused by the virus Varicella Zoster (a member of the herpes family). In a person who has had chicken pox (also caused by Varicella Zoster), the virus lies dormant in n

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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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