Empowering and educating sickle cell patients

One in every 365 African American babies in the US is born with sickle cell disease, a group of serious, inherited disorders in which the body makes “sickle-shaped” red blood cells. Sickle red blood cells are stiff and sticky, and they tend to get stuck in small blood vessels, blocking blood flow and oxygen to different parts of the body. When this occurs, it causes pain and anemia, and individuals are at increased risk for strokes, organ damage and other serious health conditions. Sickle cell disease is the most common hereditary disorder and currently affects more than 100,000 Americans, predominantly people of African descent.

In the Dayton area, when a baby is first diagnosed with the sickle cell disease or trait, their family will receive a call from Cynthia Moon, Dayton Children's Sickle Cell program manager!  

“My motto is: ‘it takes a community to support a cause,’” shares Cynthia. “Sickle cell disease is very near and dear to my heart and that's why I am so passionate about bringing awareness to this disease.”  

empowering patients through education

As Dayton Children's sickle cell program manager, Cynthia uses her passion for helping families impacted by sickle cell to create a community and foundation that they can trust. For the last 17 years, Cynthia has facilitated the referral process to Dayton Children’s for follow-up services including hemoglobin counseling and repeat testing. Her goal is to empower parents with the education they need to make informed decisions for their children and their children’s future.  

“Many parents are not even aware that they carry the gene for sickle cell and are surprised to learn that their child has sickle cell trait. Education is very important so that parents can make an informed decision before making reproductive choices, which can hopefully be the key to reducing the incidence of babies being born with sickle cell disease,” explains Cynthia.  

helping sickle cell patients beyond their treatments

Cynthia is also dedicated to researching and studying to improve the lives of children born with sickle cell disease. She recently became the first non-nurse employee accepted into the Dayton Children’s Evidence-Based Practice Scholar Program and is working on a project to implement school-based intervention programs for patients with sickle cell.   

“I am so excited about this project and look forward to hopefully getting this project implemented to improve access to educational services for patients with sickle cell disease and other chronic health conditions. I hope that I am opening doors for other non-nursing employees who have the desire to implement programs that would improve patient care within Dayton Children's,” she says.  

Cynthia hopes that others will join her in promoting access to care and education for patients and families with sickle cell or other chronic conditions. 

“Sickle cell disease does not have to directly affect an individual for them to support the cause and those affected,” says Cynthia.  

Dayton Children’s is the only facility in the area to provide comprehensive care for infants, children and teens with sickle cell disease, sickle cell trait, thalassemias and other hemoglobin variants. Our program is part of the West Central Ohio Comprehensive Sickle Cell Center, which is one of six regional sickle cell projects funded in whole by a grant from the Ohio Department of Health. The program helps patients and families with:  

• Treatment and care 
• Family support  
• Transitioning to adulthood 

For more information about Dayton Children’s sickle cell program, click here.