The Urgent Need for Medical Care for Adults with Down Syndrome

Samantha Lesmeister, affectionately known as Sammee, was struggling with more than just Down syndrome. After a fall in the shower and a subsequent head injury, she became unusually sad, lethargic, and lost her limited ability to speak. Doctors initially dismissed her symptoms as part of Down syndrome progression into adulthood, but her family was determined to find answers.

Their search led them to the University of Kansas Health System, where they found a special medical clinic for adults with Down syndrome, led by nurse practitioner Moya Peterson. Peterson carefully examined Sammee and eventually determined that she had suffered a traumatic brain injury from her fall. With therapy and Support, Sammee regained much of her strength and spirit.

However, the Lesmeister family’s experience highlights the scarcity of medical programs tailored to adults with Down syndrome. A directory published by the Global Down Syndrome Foundation lists just 15 such programs nationwide that accept patients aged 30 or older. This is a pressing issue, as the number of adults with Down syndrome in the United States tripled between 1970 and 2016, primarily because children with the condition now receive lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, obesity, and Alzheimer’s disease in middle age. As a result, their medical needs differ significantly from those of children with the condition.

Despite the growing population of adults with Down syndrome, the medical system has not kept pace. Many medical students only learn about the condition while training to treat pediatric patients. Dr. Brian Skotko, a Harvard University medical geneticist, founded an online service called Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments for adults with Down syndrome.

Advocates and clinicians argue that improved communication between healthcare providers and patients with disabilities is crucial. This often requires longer appointments, which can be costly, potentially deterring hospitals from setting up specialized clinics.

Nurse practitioner Moya Peterson demonstrates this patient-centered approach in her Kansas City clinic. She spends an hour on each initial appointment, speaking directly to patients and giving them the chance to express their thoughts, even if their vocabularies are limited.

Charlotte Woodward, an advocate for improved care for individuals with Down syndrome, emphasizes the need for more specialized clinics and increased research into health problems affecting people with disabilities as they age. She considers this an issue of civil rights.

The Lesmeister family’s story underlines the importance of tailored medical care for adults with Down syndrome. With the help of Moya Peterson and her clinic, Sammee is now able to live a fulfilling life in her community. The challenge now is to ensure that other families in similar situations have access to the care they need.

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