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

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Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Autism Speaks and DSMIG-USA DS-ASD Workgroup - Website

It is estimated that about 16-18% of people with Down syndrome also have autism spectrum disorder (ASD). The Down Syndrome Medical Interest Group-USA DS-ASD Workgroup collaborated with Autism Speaks t

Unexplained Weight Loss

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

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 consultation with your provider. While overweig

Gout in People with Down Syndrome

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

Gout is more common in people with Down syndrome (DS) (as indicated by the studies at this link  and this link ). Gout is a type of inflammatory arthritis caused by

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

Eating Refusal

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

We received the following question:  I have a son with Down syndrome. He had testicular cancer in his late 20s. Since then, he seems to have developed an eating disorder. He always feels he i

Co-Occurring Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Down Syndrome-Autism Connection - Website

  Learn about co-occurring Down syndrome and Autism Spectrum Disorder (DS-ASD) on the page linked here . The information is provided by the Down Syndrome-Autism Connection, an organization wh

Behavior Changes in Adolescents and Adults with Down Syndrome Webinar Recording (4/28/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on April 28, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

Temperature Regulation in People with Down Syndrome

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

We were sent a question about the typical body temperature of people with Down syndrome and how they regulate their body temperature.  Our review of the medical literature found little inform

Refusal to Eat Solid Foods

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

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

Post-Secondary Transition Resources

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

This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are

Health Care Transition Resources

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

The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care.  G

Employment Resources

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

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

College and Vocational Training Resources

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

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

Alternatives to Workshops

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

Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga

Trisomy 21 Toolkit for Transitioning to Adult Medical Care

Author: Children's Hospital of Philadelphia - Trisomy 21 Toolkit for Transitioning to Adult Medical Care

The Trisomy 21 Toolkit for Transitioning to Adult Medical Care outlines steps individuals with Down syndrome or other intellectual disabilities can take toward building independence, planning for the

Chronic Cough in Adults with Down Syndrome

Author: Ravi Shah, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Definition: Chronic cough is defined as any cough that lasts greater than three weeks. It is a common condition in adults with Down syndrome. Reasons that chronic cough have a higher frequency in peop

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

The Role of Polypharmacy - General Aging in Intellectual and Developmental Disabilities

Author: Julie A. Moran, DO - Geriatrician, Aging and Intellectual/Developmental Disabilities Specialist

The webinar recording below was shared by the Center for Developmental Disabilities Evaluation and Research (CDDER) and the Massachusetts Department of Developmental Services (DDS). The presentation s

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome

Author: de Knegt et al. - Pain Medicine (2017)

Abstract: Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants’ report) and self-reported pain experience in adults with Down syndrom

Down Syndrome and Autism

Author: National Down Syndrome Society, Down Syndrome - Autism Connection - Document

The document linked below shares information about Down syndrome and autism. It was developed by the National Down Syndrome Society and Down Syndrome-Autism Connection .  https://www.ndss.org

Reduced Pain Responses in Individuals with Down Syndrome

Author: Lisa Dahl, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Individuals with Down syndrome have reduced and delayed pain responses. They are not insensitive to pain, but their expression is delayed and less precise. It is hard to tell if there is a decreased a

Adult Sibling Toolkit

Author: National Down Syndrome Congress - Resource

This resource from the National Down Syndrome Congress is a tool for adult siblings who are preparing to become more involved in the support and care of their loved ones with Down syndrome. A list of

Fatigue

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

I recently had a couple inquiries about people with Down syndrome in their 50s or 60s who developed increased fatigue and falling asleep easily (these were new symptoms). Questions asked included: Is

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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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