Just last month, researchers published a study in the Pediatric Blood & Cancer academic journal about children’s perceptions of others’ understanding of their disability: Sickle Cell Disease. Among the findings, children with Sickle Cell Disease voiced concerns that their school teachers and administrators didn’t understand the disease very well and suggested the adults in their lives and had much room for improvement.
Like any disability, Sickle Cell Disease is better understood with education. And, with that education comes empowerment.
Sickle Cell Disease and Sickle Cell Trait are genetically inherited conditions that are passed down from parent to child. Sickle Cell Disease affects one of every 500 African-American births and about one out of every 36,000 Hispanic-American births. Individuals with Sickle Cell Disease are susceptible to complications such as a crisis (pain that can begin suddenly and last several hours to several days), infection, eye disease and/or stroke.
Easterseals of Northeast Central Florida’s Sickle Cell Program provides case management services and education for residents of any age who have this form of anemia; residents who may be at risk for Sickle Cell Trait in Volusia County; or those who live, work or play with individuals with Sickle Cell.
Easterseals offers residents and those diagnosed with Sickle Cell Disease educational sessions through its Sickle Cell Program to help them understand the implications of Sickle Cell Trait and how it may impact lifelong health and well-being. Individual case management, provided by a registered nurse, works to increase an individual’s (or their parent’s) understanding of the disease, too. This understanding leads to a healthier life and improved self-care.
Community groups, health fairs, schools and other interested organizations are invited to receive Easterseals’ educational information about the Sickle Cell Program, which can include materials and/or presentations.
Erika Wynn, a 2019 Honorary Ambassador with Easterseals’ Walk With Me spring fundraiser, is a local Sickle Cell Disease advocate who is actively involved in Easterseals’ Sickle Cell Program. Her experience with Sickle Cell has been supported by the Sickle Cell Program since she was a child.
“Sickle Cell has been an experience, and sometimes it becomes a big fear in my life, but this support group is here to help us understand each other’s situations,” said Erika. “Every case of Sickle Cell is not the same…and having Sickle Cell is not about being sick. It’s about knowing how to deal with things.
Said Erika: “I don’t want people’s sympathy, I just want them to understand.”
To learn more about Easterseals of North Central Florida’s Sickle Cell Program case management or educational offerings, call 386-589-3892 or read more about them online.