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Unexplained Weight Loss

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

What can cause unexplained weight loss? We were sent a question about unexplained weight loss. We are sharing some information here for general knowledge and/or information that can be used in consult

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Testicular Cancer

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

Key Points Testicular cancer is more common in men with Down syndrome compared to men without Down syndrome. Health care providers can check for testicular cancer during an annual physical exam. Testi

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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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How is Alzheimer's Disease Diagnosed in a Person with Down Syndrome?

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

Alzheimer’s disease is a progressive neurological condition. It is a type of dementia (more information about dementia is available on the National Institute on Aging website &n

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Wearing Face Masks During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED 1/14/2022 : The CDC has provided updated information on what types of masks to wear . The Centers for Disease Control and Prevention (CDC) recommends wearing masks in public settings, such as

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Menstrual Hygiene

Author: Katie Frank, PhD, OTR/L and Hannah Graham, MD - Adult Down Syndrome Center

One topic that comes up frequently at the Adult Down Syndrome Center is menstrual hygiene. Women with Down syndrome and their caregivers often ask us about strategies to make periods easier or even to

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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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T21RS COVID-19 and Down Syndrome

Author: Trisomy 21 Research Society - COVID-19 Taskforce

The Trisomy 21 Research Society  (T21RS) has developed several taskforces in response to the COVID-19 pandemic. The taskforces are studying COVID-19 infection and vaccination in people with D

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Surgery to Correct Eye Crossing (Strabismus)

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

We were asked about recurrence of strabismus that had been corrected by surgery in childhood. Strabismus is crossing of the eyes. The eyes of an individual with strabismus are not lined up properly an

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DSMIG-USA IDD COVID-19 Vaccination Position Statement

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement has been updated several times, most recently on Novemb

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COVID-19 in Children with Down Syndrome: Data from the Trisomy 21 Research Society Survey

Author: Emes et al. - Journal of Clinical Medicine (2021)

Abstract Adults with Down syndrome (DS) are at higher risk for severe outcomes of coronavirus disease 2019 (COVID-19) then the general population, but evidence is required to understand the risks for

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Weighted Blankets

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

The use of weighted blankets is a sensory technique that provides deep pressure stimulation. Evidence suggests that deep pressure stimulation produces a calming effect to the autonomic nervous system

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Visuals and Videos About the COVID-19 Vaccine

Author: Adult Down Syndrome Center - Resource List

Several organizations have created helpful resources about COVID-19 vaccines. We have provided links to some of them below.  VISUALS / PLAIN LANGUAGE RESOURCES Getting the COVID-19 Vaccine &a

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Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

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

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.

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Possible Causes of Hair Loss

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

Hair loss can occur for many reasons. Some of these may include:  Age is a common cause not only for men but for women, too. Alopecia is an autoimmune condition (condition in which the body&a

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer's Disease in Down Syndrome: Early Data from the LIFE-DSR Study

Author: Hendrix et al. - Journal of Clinical Medicine (2021)

Abstract With improved healthcare, the Down syndrome (DS) population is both growing and aging rapidly. However, with longevity comes a very high risk of Alzheimer's disease (AD). The LIFE-DSR

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Mental Health Causes for Behavior Change During a Pandemic Webinar Recording (3/28/2021)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on March 28, 2021 as part of the Massachusetts Down Syndrome Congress 37th Annual Virtual Confer

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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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The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States

Author: Gleason et al. - NEJM Catalyst, Commentary (2021)

Summary A cross-sectional study of 64,858,460 patients across 547 health care organizations reveals that having an intellectual disability was the strongest independent risk factor for presenting with

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Medical Vulnerability of Individuals with Down Syndrome to Severe COVID-19 - Data from the Trisomy 21 Research Society and the UK ISARIC4C Survey

Author: Huls et al. - EClinicalMedicine (2021)

Abstract Background:  Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19.  Methods:&

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An International Survey on the Impact of COVID-19 in Individuals with Down Syndrome

Author: Huls et al. - EClinicalMedicine (2020)

Abstract Background:  Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19. Methods:  

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Taking Medication for Side Effects from the COVID-19 Vaccine

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

As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain

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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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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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