A guide developed by the Global Down Syndrome Foundation (GLOBAL) provides a new set of guidelines to address medical needs for people with down syndrome. GLOBAL is a leading nonprofit and advocacy organization that specializes in improving the health of individuals living with down syndrome. The set of guidelines were curated with the help of clinical directors of eight large, renown Down syndrome medical centers and other experts, taking in the input of adults with Down syndrome, their family members and others advocating for the cause. A family publication of the guidelines showcases the advice that first appeared for physicians for a peer-reviewed article in JAMA (Blakemore, 2022).
GLOBAL’s recommendations deal with the nine most common types of health problems that prove challenging for adults with Down syndrome. These include behavioral issues, dementia, diabetes, cardiovascular disease, obesity, instability of bones at the base of the skull and neck, osteoporosis, thyroid issues and celiac disease. These guidelines are aimed at ensuring appropriate treatment for patients and to avoid misdiagnoses. This is because some risk factors that exist in people living with Down syndrome are unknown by some members of the medical communities, and that can make some treatments dangerous. GLOBAL said that a few of the questions asked by the medical authors had no published evidence, which shows the lack of research for conditions faced by people living with Down syndrome and the disparities they face (Blakemore, 2022).
1 in 700 babies born in the United States are affected by Down syndrome, making it the most common chromosomal disorder. However, Down syndrome research has historically been underfunded relative to other major genetic conditions. This is changing due to self-advocacy and the efforts of parents and caretakers. Although there is more research today, historic discrimination means that some medical providers still rely on inaccurate and outdated information about people living with Down syndrome (Blakemore, 2022).
References:
Blakemore, E. (2022, July 1). At last, medical guidelines address care for adults with down syndrome. The Washington Post. Retrieved July 7, 2022, fromhttps://www.washingtonpost.com/health/2022/07/04/down-syndrome-health-guidelines//
GLOBAL. (2022, July 5). Global Down Syndrome Foundation. Retrieved July 7, 2022, from https://www.globaldownsyndrome.org/
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