World Down Syndrome Day: Advocacy, Awareness, and a Personal Perspective

By Kimberly Spivack-Roelike, CNP, Family Medicine and Walk-In Clinic

Observed annually on March 21, World Down Syndrome Day (WDSD) raises awareness and promotes understanding about Down syndrome. For me, this awareness is deeply personal. My sister Kari had Down syndrome, and throughout her life, we saw both the beauty and challenges of living with the condition. The significance of this date, 3/21, honors people with Down syndrome, who typically have three copies of chromosome 21 instead of the usual two. This genetic occurrence is known as trisomy 21, the most common form of Down syndrome.

Why World Down Syndrome Day Matters

March 21 is an opportunity to educate the public about genetics, health challenges, and positive aspects of living with Down syndrome. It also highlights the ongoing advancements in care and support for individuals with the condition, as well as the importance of social acceptance, equal opportunities and access to quality healthcare.

Breaking Barriers and Promoting Inclusion

Despite advances, people with Down syndrome still face hurdles in education, employment, and healthcare. Advocacy efforts continue to ensure individuals with Down syndrome have access to the same rights as everyone else. The medical community and advocacy groups work to remove barriers that impact their quality of life, including:

Access to high-quality healthcare
Making decisions about their own lives and being heard
Employment opportunities to earn their own money
Inclusive, quality education
Community support and connectivity

Throughout Kari’s life, she faced many of these barriers. When she was hospitalized with acute respiratory distress syndrome (ARDS), my family and I saw how gaps in medical knowledge about Down syndrome affected her care.

It also emphasized the value of continued education for healthcare professionals, helping them better understand how to interact with individuals with Down syndrome and other developmental or intellectual disabilities. By fostering meaningful communication and ensuring active involvement in their own care, healthcare professionals can provide more compassionate, inclusive, and effective support.

Sharing Stories and Spreading Awareness

The medical community, along with advocacy groups, work tirelessly to bring awareness to the importance of social acceptance, human rights, and equal opportunities for people with Down syndrome. On 3/21, they unite to share stories, educate the public, and promote inclusion. Each year’s WDSD theme varies, but they all aim to empower people with Down syndrome to reach their fullest potential.

For my family, sharing Kari’s story has been a powerful way to spread awareness. Her resilience, humor, and ability to touch lives went beyond her diagnosis. She was not just a person with Down syndrome; she was a beloved sister, a friend, and an advocate in her own right. Even in her final years, she taught us about perseverance, and her impact continues to shape how I approach patient care and advocacy.

Physical Characteristics and Health Considerations

Down syndrome is commonly diagnosed at or near birth through genetic testing. Common physical features include:

A flattened facial profile
Upward slant of the eyes
Small, low-set ears
A small mouth with a tongue that may protrude
Short stature
Approximately 50% of individuals with Down syndrome are born with a heart defect

While individuals with Down syndrome often experience intellectual disabilities, it varies from person to person. Down syndrome occurs naturally and has no known cause. For Kari, this meant navigating both health challenges and societal perceptions, but she never let them define her.

Supporting Individuals with Down Syndrome

Through awareness, education, and advocacy, we can ensure individuals with Down syndrome have the opportunities and support they need to lead fulfilling lives. My sister taught me that individuals with Down syndrome should never be underestimated. Her life was full of joy, resilience, and impact, and through sharing her journey, I hope to continue advocating for those who need a voice.

Action You Do Today

On 3/21, in honor of World Down Syndrome Day, I encourage you to run or walk 3.21 miles with Down syndrome awareness in the colors blue and yellow. It’s a great way to raise awareness and show your support for individuals with Down syndrome!