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

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Enhancing Women's Health: Key Insights from the Primary Care Provider's Guide to Women's Health and Down Syndrome Webinar Recording (10/08/2024)

Author: Hannah Graham, MD - National Down Syndrome Society Webinar

Title:  Enhancing Women's Health: Key Insights from the Primary Care Provider's Guide to Women's Health and Down Syndrome  Date:  October 8, 2024 Pre

Primary Care Provider's Guide to Women's Health and Down Syndrome

Author: National Down Syndrome Society - Guidebook

Overview The Primary Care Provider's Guide to Women's Health and Down Syndrome  was developed by the National Down Syndrome Society to help physicians and other healt

Respiratory Syncytial Virus (RSV) Vaccination

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

What is respiratory syncytial virus (RSV)? RSV is a virus that causes a common respiratory infection. The infection is usually mild and causes cold-like symptoms. People usually recover in a week or t

Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

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

UPDATED MAY 2024 Recommendation The physicians at the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follo

Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Key Points Breast cancer is less common in women with Down syndrome compared to women without Down syndrome. Currently, the recommendations for breast cancer screening are the same for women with and

Antibodies Against Measles

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

What is measles? Measles is a highly contagious viral infection. Due to the availability and effectiveness of vaccines, many individuals have never experienced or even seen measles in the United State

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

Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

Menopause Visuals

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

The visuals linked below describe menopause and symptoms of menopause that women may experience. There are versions for lighter and darker skin. All menopause visuals Darker skin Lighter skin &nbs

Dysgerminomas in Women with Down Syndrome

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

Key Points A dysgerminoma is a type of cancer that usually occurs in a woman's ovary. There is limited research on dysgerminomas in women with Down syndrome. It is not clear if dysgerminomas a

Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

Story About Getting My Period

Author: Katie Frank, PhD, OTR/L

This visual explains what happens when a woman gets her period.

Story About How to Change My Tampon

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a tampon when a woman has her period.

Story About How to Change My Period Panties

Author: Katie Frank, PhD, OTR/L

This visual explains how to change period panties when a woman has her period.

Story About When to Change My Menstrual Hygiene Product

Author: Katie Frank, PhD, OTR/L

This visual explains that women need to change their pad, tampon, or period panties throughout the day when they have their period.

Story About How to Change My Pad

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a pad when a woman has her period.

Steps to Accessing Adult Services and Supports

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

While special education services are an entitlement, adult services are based on eligibility and availability of funding. In the adult developmental disabilities system, Medicaid is the primary paymen

Guardianship

Author: Ann Garcia - Patient Advocate

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

Alternatives to Guardianship

Author: Ann Garcia - Patient Advocate

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

Regression & Down Syndrome

Author: National Down Syndrome Society - Handout

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain. ECT can be frightening

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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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