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

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How to Put Your Hair into a Ponytail Video

Author: Kayla Millan, OTS and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below demonstrates one way of putting your hair into a ponytail.  See the  Self-Care and Hygiene  section of our library for additional resources.   Royal

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Urinary Retention

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

Key Points Urinary retention is the build-up of excessive urine in the bladder. It appears to be more common in people with Down syndrome. A common reason for urinary retention in people with Down syn

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Urinary Tract Infections (UTIs)

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

Key Points Urinary tract infections (UTIs) are infections of the urethra, bladder, ureters, and/or kidneys. People with Down syndrome have risk factors for getting a UTI due to issues related to not e

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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

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Wearing My Hearing Aids Story

Author: Abby Rowley, LCSW and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

Wearing My Hearing Aids   This visual story explains why it is important to wear our hearing aids and describes when to wear our hearing aids and how to take care of them.  

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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 January 18, 2024 The physicians of the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follow the recommenda

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Getting Ear Wax Removed

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

This Getting Ear Wax Removed Visual    explains what happens when we get our ears cleaned out. This visual can help individuals with Down syndrome know what to expect when g

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Cerumen Impaction (Ear Wax Buildup)

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

Key Points Cerumen impaction is obstruction of the ear canal with ear wax. It is a problem that is more common in people with Down syndrome. There are treatments that can be done at home to prevent an

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Hearing Loss in Adults with Down Syndrome

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

Overview of hearing loss Hearing involves several steps as the sound passes from the ear to the brain. The ear is divided into three parts: the outer, middle, and inner ear. Hearing impairment, which

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Cholesteatomas

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

What are cholesteatomas? A  cholesteatoma is a collection of skin cells that become more fibrous and build up in the middle ear (where the small bones are that are part of our hearing mechani

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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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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 t

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Down Syndrome for the Otolaryngologist: A Review

Author: Zalzal & Lawlor - JAMA Otolaryngology - Head & Neck Surgery (2023)

Abstract Importance:  There are many features of Down syndrome that prompt referral to an otolaryngologist. As the lifetime prevalence and life expectancy of individuals with Down syndrome in

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Onychomycosis - Fungal Infection of the Nails

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

Onychomycosis is a fungal infection of fingernails or toenails. This infection is more common in people with Down syndrome (DS). Toenails are more commonly infected than fingernails.  Video W

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Common Dermatologic Disorders in Down Syndrome: Systematic Review

Author: Lam et al. - JMIR Dermatology (2022)

Abstract Background:  Down syndrome (DS) has been associated with cardiovascular, gastrointestinal, and immune-related abnormalities. Several dermatologic conditions, including hidradenitis s

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Sunscreen Use

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

When the summer months approach, many of us stock up on sunscreen and other products to protect our skin from the sun. While we tend to associate sun exposure with the warmer seasons, we need to prote

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Pneumococcal Vaccines

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

What is pneumococcal disease?  Pneumococcal disease is caused by  Streptococcus pneumoniae  bacteria. It is a leading cause of vaccine-preventable illness and death in the U

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Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

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Comorbidity Screening in Hidradenitis Suppurativa: Evidence-Based Recommendations from the US and Canadian Hidradenitis Suppurativa Foundations

Author: Garg et al. (2022) - Journal of the American Academy of Dermatology

Abstract Background:  Hidradenitis suppurativa (HS) is associated with comorbidities that contribute to poor health, impaired life quality, and mortality risk. Objective:  T

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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

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Safety and Long-Term Immunogenicity of BNT162b2 Vaccine in Individuals with Down Syndrome

Author: Valentini et al. - Journal of Clinical Medicine (2022)

Abstract We aimed to evaluate the safety and immunogenicity of the BNT162b2 vaccine in young people with Down syndrome (DS), and to compare their humoral immune response with those of the healthy cont

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Prevalence of Infectious Diseases Among 6078 Individuals with Down Syndrome in the United States

Author: Fitzpatrick et al. - Journal of Patient-Centered Research and Reviews

Abstract A recent disease prevalence study of the largest documented Down syndrome (DS) cohort in the United States strongly suggested significant disparity in general infectious disease conditions am

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Down Syndrome and Hidradenitis Suppurativa

Author: The Society for Pediatric Dermatology - Patient education

Hidradenitis suppurativa (HS) is a chronic skin condition that causes painful bumps under the skin. The handout linked below was developed by the Society for Pediatric Dermatology   . Informa

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Dermatologic Conditions in Down Syndrome

Author: Ryan et al. - Pediatric Dermatology (2021)

Abstract Down syndrome (DS) is the most common chromosomal condition and affects many organs including the skin. Dermatologists are an integral part of the DS care team. This is a review of both commo

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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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