It was developed by the World Down Syndrome Foundation (GLOBAL), a leading nonprofit and advocacy organization focused on improving the health of people with the disease. The foundation worked with the clinical directors from eight of the largest Down syndrome medical centers as well as other experts, in consultation with adults with Down syndrome, their family members and other advocates.
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Family publication distills guidelines first published for physicians in peer-reviewed journal article in JAMA.
The recommendations cover the nine most common types of health problems faced by adults with Down syndrome: behavioral problems, dementia, diabetes, cardiovascular disease, obesity, instability of the bones at the base of the skull and neck, osteoporosis, thyroid problems and celiac disease. .
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The guidelines reflect the importance of tailoring treatment to patients and avoiding misdiagnosis. Some risk factors are unclear and some treatments can be dangerous. The foundation says many of the questions posed by the medical authors had no published research evidence — which officials said was evidence of the disparities faced by people with Down syndrome.
Although it is the most common chromosomal abnormality in the United States, affecting About 1 in 700 babies born, Down syndrome research has historically been underfunded compared to other major genetic conditions. But it’s changing due to self-advocacy and the efforts of parents, guardians, doctors and others. Today, more research is being undertaken. However, discrimination and disparities still exist. And some healthcare providers still rely on inaccurate or outdated information about the disease.
Want to take a look at the new guidelines? Visit bit.ly/DownGuidelines to download the free guide.
Global guidelines on medical care for adults with Down syndrome