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Adult Down Syndrome

About 1 in 772 babies in the U.S. is born with Down syndrome. This means about 5,100 babies with Down syndrome are born per year, according to the National Down Syndrome Society.

Many adults with Down syndrome live an active healthy life, with life expectancy now around 58-61 years. Specialized care makes this possible. Because of their increased health risks, ongoing healthcare is important so they can stay active, work, socialize and live comfortably.

Adults with Down syndrome can find a medical home at The University of Kansas Health System, where we offer specialized, comprehensive primary care for adults with Down syndrome.

What is adult Down syndrome?

Down syndrome is a genetic disorder that occurs when a baby that is born has an extra copy of chromosome 21 due to abnormal cell division. The extra genetic material can cause developmental changes and physical and intellectual abnormalities. It can also be the cause of several medical issues.

Any abnormalities, changes or problems widely vary depending on the individual. These issues impact people with Down syndrome throughout their adulthood, effecting their active lifestyle, sexual health, heart health and overall well-being.

Call 913-588-1915 for an appointment. Ask for the family medicine Down syndrome clinic. No referral necessary.

Types of Down syndrome

There are 3 types of Down syndrome:

Adult Down syndrome symptoms and risks

Each person's experience with Down syndrome is unique. However, some symptoms are more common than others. Many people with Down syndrome have irregular physical features like a flattened face, poor muscle tone, or a small head, neck or other parts of the body. Many also have intellectual disabilities, memory problems and delayed language development.

People with Down syndrome are more at risk for health problems such as heart defects, immune disorders, leukemia and other complications.

People with Down syndrome are diagnosed at birth. There are no measures one can take to prevent giving birth to a child with Down syndrome, although there are a few known risk factors. These include:

  • Being a carrier of genetic translocation that occurs in some cases of Down syndrome
  • Giving birth at an advanced age, typically 35 years or older
  • Giving birth to a previous child with Down syndrome

Adult Down syndrome diagnosis and screening

Adults with Down syndrome are diagnosed with the condition at birth. Because those with Down syndrome are at higher risk for health issues, it's necessary for them to keep up with routine screenings, blood tests, immunizations and other primary care activities.

Adult Down syndrome treatment

The University of Kansas Health System specializes in primary and specialty care for adults with Down syndrome. Our primary provider is a board-certified, family medicine nurse practitioner who is able to recognize the unique health issues and challenges that adults with Down syndrome face that other general providers may not recognize. Services provided for patients include:

  • Annual and routine screenings
  • Clinical trials, including studies surrounding Down syndrome and Alzheimer's disease
  • Comprehensive care for ongoing health and wellness and improved quality of life
  • Heart health screenings
  • Immunizations
  • Mental health screenings
  • Nutrition counseling with registered dietitians
  • Physicals, including sports physicals, annual physicals and well-woman exams
  • Prescriptions and labs
  • Referrals to the region's leading subspecialists
  • Sick appointments
  • Subspecialized primary care
  • Transition support from pediatric to adult care model
  • Treatments for common illnesses

Because adults with Down syndrome are at higher risk for a multitude of health issues, our primary provider can refer patients to other specialists who can provide additional support as needed.

Why choose us for adult Down syndrome treatment

The University of Kansas Health System is 1 of only 12 locations in the United States to provide primary and specialty care that is specifically tailored toward adults with Down syndrome. We offer support for patients across the Midwest including those in Kansas and Missouri, and we can partner with your hometown care team to ensure the most complete care possible. We also offer convenient telehealth appointments through MyChart, where patients can also view their medications, immunizations, allergies, health information and lab results.

The University of Kansas Hospital has been named the No. 1 hospital in Kansas and in Kansas City by U.S. News & World Report since the inception of these awards. The University of Kansas Health System is also part of an academic medical center, which allows us to provide complex care with access to the latest research and treatment options.