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

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Using the Toilet Visual

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

The visuals under the headers can help us remember the steps for using the toilet. Tap or click on the headers to find printable versions for girls/women and boys/men. There are also versions

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Create a Showering or Bathing Routine Visual

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

The images and template below can be used by individuals with Down syndrome and their families to create a visual showing the steps of their showering or bathing routine.    Print on

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Constipation in Down Syndrome

Author: Samantha Ghanayem-Bouikidis, MD and Brian Chicoine, MD - Family Medicine, Advocate Lutheran General Hospital

Constipation is a common problem in people with Down syndrome as well as the general population. Studies show that chronic constipation affects between 2 and 27% of the general population. It is thoug

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Toilet Hygiene

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

Thorough toilet hygiene is difficult for many individuals with Down syndrome. However, there are several options to increase independence and success with toilet hygiene. Use pre-moistened wipes . Be

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Tips for Managing Medications

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

Whether on one medication or many, people with and without Down Syndrome have difficulty taking medication as prescribed. The following tips can help simplify medication management and prevent missed

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Story About Grooming/Hygiene for Girls

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

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Story About Grooming/Hygiene for Boys

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

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Irritable Bowel Syndrome

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

Irritable bowel syndrome (IBS) is a health issue in the intestines (bowels). It is not clear how common it is in people with Down syndrome (DS).  However, we suspect that IBS is more common i

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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

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Adaptive Clothing

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

Dressing can be difficult for some individuals with Down syndrome, in part because bilateral coordination and dexterity skills can be challenging for many individuals with Down syndrome. I ha

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Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Breast cancer screening recommendations have varied over time and continue to vary. Organizations have different recommendations for when women should start being screened for breast cancer and how of

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Swallowing Problems (Dysphagia)

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

Swallowing problems (dysphagia) are common in people with Down syndrome (DS). In our large cohort study that reviewed health data from people cared for within Advocate Health, swallowing problems were

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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,

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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

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Bathing and Showering Tips

Author: Natalie Rivera, OTS and Katie Frank, PhD, OTR/L - Occupational therapy student and occupational therapist

Bathing and showering may be difficult for some individuals with Down syndrome for many reasons. Below are a variety of adaptive strategies and equipment to promote safety and independence with this s

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Use of Probiotics by People with Down Syndrome

Author: Adult Down Syndrome Center - Resource

What are probiotics? Probiotics are foods or supplements that contain live microorganisms (e.g., bacteria). Foods with labels that say "live and active cultures" contain probiotics.

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Tips for Washing and Rinsing Hair in the Shower

Author: Adult Down Syndrome Center

Some families have shared with us that washing and rinsing hair can be a challenging task for their loved ones with Down syndrome. We have compiled a list of suggestions from families for mak

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Liver Fibrosis

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

Fibrosis of the liver can be thought of as a "scar" in the liver that results from chronic liver injury. It is similar to scarring that may form on the skin or in the lung or other o

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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

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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.

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Lotion Options

Author: Adult Down Syndrome Center

Some people do not like the feeling of lotion or creams. This handout shows examples of lotions that can be used on wet skin and lotions that can be sprayed on skin.

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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/).

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Treating Gastroesophageal Reflux Disease with Surgery

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

We were asked about surgical options for treating gastroesophageal reflux disease (GERD). GERD occurs when stomach contents, including acid, go "backwards" from the stomach up into t

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Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

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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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