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Navigating school with chronic health conditions: Advocacy and support

Aug 25, 2023

By: Dylan Hodges

Sickle cell disease (SCD) is a widespread condition affecting millions globally, with approximately 100,000 cases in the United States. Among the affected individuals is Xzayveon Garner, a Ben Davis High School freshman embarking on a new academic journey despite the challenges posed by his condition. As families prepare for the upcoming school year, it’s essential to understand how to support children with chronic health conditions like SCD in the educational setting. Joining the conversation are Xzayveon, his mother Shannon, and school counselor Steve Yockey from the Indiana Hemophilia and Thrombosis Center.

For families with children facing chronic health conditions, Xzayveon’s story is an inspiring testament to resilience and advocacy. SCD impacts around one in 365 Black or African American births, emphasizing the importance of raising awareness and fostering a supportive environment.

Yockey emphasizes that educating students about self-advocacy is crucial. Encouraging children to communicate with teachers and peers about their condition helps them feel empowered and prepared. It’s suggested to initiate these conversations early on and involve students in discussions about their health needs and protocols.

Shannon, Xzayveon’s mother, stresses the significance of open communication with school staff and teachers. Establishing an Individualized Education Program (IEP) tailored to the child’s needs ensures proper care and support during school hours. Shannon’s approach involves ensuring that everyone involved, from teachers to nurses, is informed about Xzayveon’s condition.

Xzayveon himself highlights the importance of being open and educating peers and teachers about SCD. He encourages fellow students to speak up, be normal, and foster understanding among their close friends and parents.

Navigating the conversations around chronic health conditions can be daunting. Yockey suggests that starting with simple, direct statements like “I have [condition]” can initiate productive conversations. Overcoming shyness and learning to advocate for oneself are crucial life skills that can empower students to ensure their health and well-being in the educational environment.

As Xzayveon begins his freshman year with determination and self-advocacy, his story serves as an inspiration to students and families facing similar challenges. By fostering open conversations, awareness, and understanding, schools can create a supportive atmosphere that enables students with chronic health conditions to thrive.


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