An upcoming University of Memphis event aims to raise awareness about sickle cell disease, a debilitating blood disorder that affects up to 8 percent of African Americans.
The Second Annual Sickle Cell Awareness Day at the University of Memphis will take place Tuesday, October 1 from 10 a.m. to 1 p.m. at the University Center. This event is sponsored by the Department of Communication and Film, in conjunction with The School of Public Health, St. Jude Children’s Research Hospital, and The Sickle Cell Foundation of Tennessee.
“Our goal is to create a hub of support and advocacy on campus for students, staff, and faculty who deal with this illness,” said Amanda Young, associate professor of communication studies. “Memphis has one of the highest concentrations of sickle cell in the nation, but because of the stigma associated with the disease, many sufferers fly under the radar.”
The event will begin at 10 a.m. in the Atrium of the University Center and then move to the Beal Room at noon for a luncheon and panel discussion about living with sickle cell disease. Reginald Smith, executive director of the Sickle Cell Foundation of Tennessee, will moderate the panel.
“We have a number of patients who have since become advocates who have become a big part of this event,” said Young.
The event is largely planned by those who have sickle cell, known as sickle cell warriors. In addition, Sickle Cell Awareness Day will include displays of art and poetry, as well as information from a variety of organizations.
The idea behind Sickle Cell Awareness Day grew out of a graduate seminar on health communication taught by Young in the spring of 2018. The seminar primarily focused on social justice and communication issues inherent in sickle cell disease.
“I was teaching the class during MLK50, and I wanted to incorporate something to honor Martin Luther King with the belief that he would be at the forefront of modern healthcare reform,” said Young. “I wanted the class to look at the communication issues involved in Sickle Cell research and treatment. In that aspect, we were learning together.”
Many of the students in Young’s class were inspired by Dying in the City of the Blues, a book by Keith Wailoo that documents the story of Sickle Cell research and treatment in Memphis, which ranks among the highest rates of sickle cell disease in the country. That group of students remained in touch after completion of the graduate seminar and came together to host the first-ever Sickle Cell Awareness Day in September of 2018.
“We wanted to make it an annual event because we want to turn the University of Memphis into an ongoing source of support to those who are affected by this disease,” said Young.
According to St. Jude Children’s Research Hospital, nearly one of every 365 African-American babies born in the U.S. has sickle cell disease.
“It’s a devastating disease for people who have it, and they often feel very marginalized or isolated,” said Young. “We feel that Memphis needs to do a better job talking about it and reaching out to those who are affected by it.”