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Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

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 th

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Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

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

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Getting an EEG Visual

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

This Getting an EEG visual  explains what happens when we have an electroencephalogram (EEG) done. It can help individuals with Down syndrome know what to expect when going for an EEG.

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Attention Deficit/Hyperactivity Disorder (AD/HD)

Author: Brian Chicoine, MD, and Dennis McGuire, PhD, LCSW - Adult Down Syndrome Center

*This article was adapted from  Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges, 2nd Edition. What is attention-deficit/hyperactivit

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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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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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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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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

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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

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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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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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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

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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 tics can

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

Author: Miles et al. - 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-

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Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether m

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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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