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

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When Down Syndrome and Autism Intersect (2nd edition)

Author: Margaret Froehlke, RN, BSN, and Robin Sattel, MS - Book (2024)

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals       Publisher description The first edition of When Down Syndrome and Aut

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Down Syndrome and Autism Spectrum Disorder Presentations

Author: Multiple Presenters - Multiple Organizations

The Dual Diagnosis of Down Syndrome and Autism Webinar   Presenters: Noemi Spinazzi, MD, FAAP, and Teresa Unnerstall Host Organization: Down Syndrome Connection of the Bay Area   Aut

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Prostate Cancer Screening in Men with Down Syndrome

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

Key Points on Prostate Cancer Prostate cancer is one of the most common types of cancer in men. There is uncertainty about the potential benefits and risks of prostate cancer screening for men.&nb

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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

Key Points Breast cancer is less common in women with Down syndrome compared to women without Down syndrome. Currently, the recommendations for breast cancer screening are the same for women with and

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Dysgerminomas in Women with Down Syndrome

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

Key Points A dysgerminoma is a type of cancer that usually occurs in a woman's ovary. There is limited research on dysgerminomas in women with Down syndrome. It is not clear if dysgerminomas a

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The Groove in People with Down Syndrome

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

Key Points The groove is a preference for sameness, repetition, or routine. Many (but not all) people with Down syndrome have grooves. There are advantages and disadvantages to having grooves. Flexibi

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Misunderstandings Caused by Different Perceptions

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

Sometimes, we are asked questions about individuals with Down syndrome who are said to be “lying” or “telling lies.” People with Down syndrome (just like people

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Fear of Heights

Author: Brian Chicoine, MD and Abby Rowley, LCSW - Adult Down Syndrome Center

We have seen people with Down syndrome with a variety of phobias. Concern about heights is one we see more commonly. For this fear in particular, we often ask if it is indeed a phobia or if it is caus

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Keratoconus in People with Down Syndrome

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

We received a question about treatment of keratoconus in people with Down syndrome.  What is keratoconus? Keratoconus is an eye condition in which the cornea (the clear part in the front of t

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Employment Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking

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College and Vocational Training Resources

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If

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Resources on Executive Functioning and Down Syndrome

Author: Adult Down Syndrome Center - Resource List

Executive functioning (or executive function) describes skills and mental processes that enables us to set goals, make plans, and manage daily life. Working memory, flexible thinking, self-control, an

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Common Characteristics of Adolescents and Adults with Down Syndrome

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

"If you have met one person with Down syndrome, you have met one person with Down syndrome" is a sentiment often shared in the Down syndrome community. We certainly know this idea ap

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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

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Down Syndrome EyeWiki

Author: American Academy of Ophthalmology - Eye Encyclopedia

EyeWiki is an Eye Encyclopedia developed by the American Academy of Ophthalmology with content contributed by ophthalmologists (eye physicians and surgeons). There is a Down syndrome page wit

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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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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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Self-Talk in People with Down Syndrome Webinar Recording (11/10/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD on November 10, 2021. Dr. Chicoine is the co-founder and medical director at the Adult Down Syndrome Center. The topic of th

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Routines Involving Writing or Copying

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

We received the following question:  Have you ever seen cases in which a person with Down syndrome keeps writing in a journal all day? My loved one keeps on writing names of his favorite supe

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The Groove in People with Down Syndrome Webinar Recording (8/25/2021)

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 August 25, 2021. Dr. Chicoine is the medical director at the Adult Down Syndrome Center and D

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Changes in Self-Talk

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

We received the following question:  My teenage daughter self-talks. Recently, it has taken over. It’s like there is a continuous narrative involving movie and music stars, family,

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

Author: Down Syndrome-Autism Connection - Website

It is estimated that 16-18% of people with Down syndrome also have autism spectrum disorder. The Down Syndrome-Autism Connection  is a nonprofit organization that provides s

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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

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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

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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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