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

Duration: 7 ms, Number of Results: 49

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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

When Things in My Life Change Story

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

When Things in My Life Change   This visual story discusses how to manage changes that may occur throughout our lives. Additional visuals are available in the  Transitions  

When Staff Members Leave Story

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

When Staff Members Leave   This visual story explains why staff members may leave their job, how we might feel, and how to cope with the change. Additional visuals are available in the&nb

Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

Moving to a Group Home Story

Author: Michele Mattox, LCSW, LISW-CP - No Limits Counseling & Coaching

The story linked below talks about moving to a group home, including how to deal with new emotions and managing a schedule. Moving to a Group Home     The story was created

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

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

Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

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

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

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

Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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

Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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

Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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

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

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

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.

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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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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