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For people with Down syndrome, family members, caregivers and professionals.
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We were asked a question about the use of Prolia to treat osteoporosis in individuals with Down syndrome. Osteoporosis is a condition in which a person's bones become brittle or weak. It can l
As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain
When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h
Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain
The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on November 10, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Synd
In September 2017, we started filming a video journal with Colleen, a woman with Down syndrome and Alzheimer's disease, and Bo, Colleen's sister and caregiver. Colleen was diagnosed wi
UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal com
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
*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&
Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar
This booklet for families and caregivers of individuals with Down syndrome discusses dementia. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).
This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).
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
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
The resource linked below is a guidebook on aging from the Canadian Down Syndrome Society. While some of the information and recommendations are specific to Canada, the resource contains helpful infor
An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.
This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.
This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.
What is the effect of menopause on cognition in women with Down syndrome? Menopause , defined as the cessation of menses (periods) for 12 months, occurs at a slightly younger age in women with Down sy
This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are
We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l
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
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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