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For people with Down syndrome, family members, caregivers and professionals.
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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
The resources in the Families and Caregivers section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down
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
Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit
Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ
Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit
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
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
The Regression & Down Syndrome page on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and
Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi
The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe. USA Fact Sheet Last updated Novemb
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
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
Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in
The list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included: In-Hom
The Adult Sibling Toolkit 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
On December 14, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Traveling the Road Towards Independence." The presenter was Lina Patel, PsyD. View recording
We sometimes receive questions about dental implants. A small number of people with Down syndrome seen in our office have reported that they opted to get dental implants, and most of these individuals
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.
The link below takes you to a closed Facebook page for families, caregivers, and professionals who support individuals with Down syndrome who have experienced or are experiencing regression. If you cl
In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi
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
Dental Care Guidance for Caregivers of Patients with Down Syndrome is an article that shares information about common dental problems, finding the right dentist, sedation, appointment preparation, and
The video below is a recording of a presentation on Oral Health and Hygiene hosted by the Adult Down Syndrome Center in March 2018. Self-advocate Bridget Brown describes important aspects of oral hygi
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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