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For people with Down syndrome, family members, caregivers and professionals.
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Key Points Urinary retention is the build-up of excessive urine in the bladder. It appears to be more common in people with Down syndrome. A common reason for urinary retention in people with Down syn
Key Points Urinary tract infections (UTIs) are infections of the urethra, bladder, ureters, and/or kidneys. People with Down syndrome have risk factors for getting a UTI due to issues related to not e
Key Points Urinary incontinence or urinary "accidents" are more common in people with Down syndrome. There are many potential causes. The inability to empty the bladder com
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
Key Points Cerumen impaction is obstruction of the ear canal with ear wax. It is a problem that is more common in people with Down syndrome. There are treatments that can be done at home to prevent an
Overview of hearing loss Hearing involves several steps as the sound passes from the ear to the brain. The ear is divided into three parts: the outer, middle, and inner ear. Hearing impairment, which
What are cholesteatomas? A cholesteatoma is a collection of skin cells that become more fibrous and build up in the middle ear (where the small bones are that are part of our hearing mechani
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
Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus
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
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
In January 2022, Suzanne Aaron, an information & outreach specialist from the Illinois Life Span Program of the Arc of Illinois, presented a webinar called "An Introduction t
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 frequently see that the lab values of kidney function of people with Down syndrome (DS) we evaluate at our Center are mildly abnormal. The kidney function is slightly decreased compared to what is
In May 2021, the Arc of Illinois hosted a webinar called, "An Introduction to Developmental Disability Resources, Organizations, and Terms." It was a webinar for family members and c
The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath
It’s holiday time and many people are busy decorating, baking cookies, shopping, and planning family celebrations. There are often significant changes in routine and breaks from school or da
Observing someone demonstrate appropriate behavior, watching a parent or friend model healthy activity, or having a mentor to observe and imitate are all ways we learn a variety of healthy behaviors i
When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of th
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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