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

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Supporting Healthy Sexuality for Individuals with Down Syndrome Webinar Recording (11/16/2022)

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

This is a recording of a webinar presented by Katie Frank, PhD, OTR/L of the Adult Down Syndrome Center in Park Ridge, IL. We know that having healthy relationships benefits the physical, mental, and

Planet Puberty

Author: Family Planning NSW - Digital Resource (Australia)

Planet Puberty is a resource designed to guide parents of individuals with intellectual disabilities through their child's puberty journey. Topics include the body, feeling good, relationships

Supporting Healthy Sexuality for Your Loved One with Down Syndrome Webinar Recording (6/15/2022)

Author: Katie Frank, PhD, OTR/L - North Carolina Down Syndrome Virtual Speaker Series

On June 15, 2022, the North Carolina Down Syndrome Alliance hosted a webinar called "Supporting Healthy Sexuality for Your Loved One with Down Syndrome" presented by Katie Frank, PhD

Urinary Retention

Author: Agni Vlahos, MD and Brian Chicoine, MD - Family Medicine

The bladder is an organ composed of layers of smooth muscle that sits in the pelvis. The function of the bladder is to collect urine that is made in the kidneys. When the bladder reaches its 

Birth Control in Women with Down Syndrome

Author: Hannah Graham, MD - Adult Down Syndrome Center

Birth control encompasses a wide range of strategies and medications used to prevent pregnancy. Besides preventing pregnancy, some of the medications may be used to treat other common symptoms of mens

Testicular Cancer

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

While many solid tumor cancers are  less  common in people with Down syndrome compared to people without Down syndrome, testicular cancer is one type of solid tumor cancer that is&am

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 c

Kidney Function in People with Down Syndrome

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

We frequently see that the lab values of kidney function of people with Down syndrome (DS) we evaluate at our Center are mildly abnormal. The kidney function is slightly decreased compared to what is

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,

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

Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

Prostate Cancer Screening in Men with Down Syndrome

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

Should men with Down syndrome (DS) undergo prostate specific antigen (PSA) blood testing for prostate cancer screening? The United States Preventive Services Task Force (USPSTF) recommends the followi

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/).

Resource List for Sexual Assault and/or Abuse

Author: Adult Down Syndrome Center

This is a list of resources primarily for individuals in the Chicagoland area.

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.

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 unreco

Steps to Accessing Adult Services and Supports

Author: Grace O’Connor and Ann Garcia - Patient Advocates, Adult Down Syndrome Center

While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the

Dating FAQs

Author: Terri Couwenhoven, MS - Sexuality Educator and Clinic Coordinator

In the document linked below, Terri Couwenhoven shares answers to frequently asked questions about dating. Terri is the author of several books including  Teaching Children with Down

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) recomme

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

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 th

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

Depo-Provera

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

We received a question about the use of Depo-Provera. Depo-Provera is an injection of progesterone that is used to: Prevent pregnancy Reduce periods and/or symptoms from periods The injection is given

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