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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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Visuals for Medical Appointments

Author: Adult Down Syndrome Center - Resource List

Visuals can help individuals with Down syndrome prepare for and know what to expect at medical appointments. Our Resource Library has several examples.    Visits to the Doctor &n

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Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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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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Anesthesia

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

There are four main factors to consider in a discussion of anesthesia in people with Down syndrome (DS): Anesthesia can be an important part of good health care at times. Many people

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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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Tips for Successful Blood Draws

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

Do you or does a family member or friend with Down syndrome dread getting blood drawn? Here are some tips to help with blood draws:  Make sure to be hydrated! This will help the phle

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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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My Health Passport

Author: Florida Center for Inclusive Communities

This health passport can be filled out by individuals with Down syndrome and their families to share information with health care professionals about how they can best support the individual.

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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

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Vision in Adults with Down Syndrome

Author: Lalithasree Chintam, MD - Family Medicine Resident, Advocate Lutheran General Hospital

People with Down syndrome (DS) experience many of the common eye problems that people without DS experience. Some people with DS experience these common eye problems more frequently and/or at an earli

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Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unreco

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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

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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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