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Article on DSRD from The Washington Post

May 17, 2024 05:30 AM
DSRD_Washington_Post_article
 

The Washington Post recently published an article on Down syndrome regression disorder opens in new window ***. The headline and sub headline read:

“A mystery illness stole their kids’ personalities. These moms fought for answers. Their children’s decline was precipitous and dramatic, with patients losing function in days or weeks, including the ability to talk, move or take care of themselves.”  

Down syndrome regression disorder (DSRD) occurs when a person with Down syndrome loses previously acquired skills used for daily living, language, motor abilities/function, or social interaction. It typically occurs between the ages of 10 and 30. The article conveys how devasting DSRD can be for individuals with Down syndrome and their families and friends.

A few things about DSRD to highlight: 

DSRD is one - but not the only - cause of regression or decline in skills.

Physical or mental health conditions, major life changes, and other stressors can cause a person with Down syndrome to have a decline in skills. For example, a person who develops cataracts and has difficulty seeing may not be able to complete their daily self-care tasks as well as they used to. Surgery to correct the cataracts and occupational therapy can help them regain their previous level of function.

The prevalence of DSRD is difficult to measure.

Health care providers use defined criteria to diagnose physical and mental health conditions, which have specific codes to identify them. The diagnostic criteria for DSRD are still being defined, and DSRD does not have a code identifying it. This makes it difficult to determine how many people have DSRD. The prevalence of DSRD is estimated to be between 1 to 5 percent of people with Down syndrome.

Research to better understand DSRD is being done.

The Washington Post article describes some of the studies being done on causes of and treatments for DSRD. Many of the researchers are members of the Down Syndrome Medical Interest Group-USA (DSMIG-USA), which has a workgroup dedicated to learning more about DSRD and how to support people with DSRD.

If your loved one with Down syndrome experiences a decline in skills, it is important to schedule an appointment with their health care provider. If their provider is not familiar with DSRD, two resources that you can share are:

  • Regression & Down Syndrome opens in new window

    • The National Down Syndrome Society website has a resource with a DSRD symptoms checklist. 

  • DSMIG-USA Project ECHO opens in new window

    • ‚ÄčDSMIG-USA offers a program that gives health care providers the opportunity to consult on the care of patients with Down syndrome with Down syndrome experts. 

Additional resources are available in the Decline in Skills and Regression section of our Resource Library.

*** A subscription to The Washington Post is required to read the article. Your local library may offer a free short-term online subscription.

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