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.

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.

There are 3 types of Down syndrome:

Each person's experience with Down syndrome is unique. However, some symptoms are more common than others. Many adults with Down syndrome have intellectual disabilities, mental health issues, autoimmune issues and behavioral issues.

People with Down syndrome are more at risk for health problems such as obesity, autoimmune disorders like thyroid problems and celiac disorder, and necessary continuous heart monitoring.

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

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.

The University of Kansas Health System specializes in primary and specialty care for adults with Down syndrome. 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 care including screenings
• Immunizations
• Mental health screenings
• Nutrition counseling with registered dietitians
• Physicals, including sports physicals, annual physicals and wellness 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

The University of Kansas Health System offers one of the few dedicated adults with Down syndrome family medicine primary care programs in the nation. 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. 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.