An advocate says adults with the condition should not be expected to seek care at programs housed in children’s hospitals. The country should set up specialized clinics and finance research into health problems that affect people with disabilities.
in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.
The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about 4 years in 1950 to 58 years in the 2010s, according to. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.
, which helps families and medical practitioners understand the complications and possible treatments.Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.
Advocates and clinicians say it’s crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the“It’s very important to us that we include the individuals with Down syndrome in their care,” he said. “If you’re doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer.
Yeo’s mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.
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