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MONTROSE, Mo. — It took Samantha Lesmeister’s family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.
The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing and no longer wanted to leave the house.
General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.
The family didn’t buy it.
Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.
The clinic Marilyn found is in Kansas City, Kan., 80 miles northwest of the family’s cattle farm in central Missouri. She made an appointment for her daughter and drove up.
The program’s leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.
“She reassured me that, ‘Mom, you’re right. Something’s wrong with your daughter,'” Marilyn Lesmeister said.
With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.
Sammee, now 27, can again speak a few words, including “hi,” “bye,” and “love you.” She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.
Without Peterson’s insight and encouragement, the family likely would have given up on Sammee’s recovery. “She probably would have continued to wither within herself,” her mother said. “I think she would have been a stay-at-home person and a recluse.”
The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. 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.
To help those who can’t, an online service has been created, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments.
(This article was produced in KFF Health News by Tony Leys on May 23, 2023.)
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