At their next Sickle Cell Research and Education Day, Rogelle and Kenyon expect to share their experience with other families living with sickle cell disease.
Saniya was 1 week old when her parents learned she had sickle cell disease.
A few weeks later, they attended their first Sickle Cell Research and Education Day. They attended again in 2015, and will be back in 2016. For Rogelle and Kenyon Hackworth, this annual event has become a lifeline for information and support. They look forward to the updates on the newest research.
“The day gives visibility to a disease that’s often neglected,” explains psychologist Lori Crosby, PsyD. “Families learn firsthand about research and how it improves care.” In addition, they can participate in research by filling out surveys, joining focus groups, or giving blood and urine samples. And there’s time for fun.
Rogelle and Kenyon also appreciate meeting other families “who are walking a similar path. They’ve become our support system.”
They especially needed that emotional support during a rocky period when Saniya was hospitalized 11 times in 13 weeks. “The moms I met at Research Day were the ones I texted at 2 am as we were on our way to the hospital,” Rogelle recalls.
Once Saniya reached 9 months, she was old enough to start taking hydroxyurea. Researchers at Cincinnati Children’s have shown this drug increases fetal hemoglobin and decreases pain and other complications of sickle cell disease. Rogelle and Kenyon heard a presentation about it at Research Day in 2015.
“We try not to take medicine, and we had many questions about the long- and short-term effects,” Rogelle says, “but learning about the research they’ve done helped reassure us.”
Since starting daily doses of hydroxyurea through a research study, Saniya has been sick only twice, and has had just one hospital admission.
For more information about the event and to learn how you can be involved with the next Sickle Cell Research and Education Day, contact us at SCDResearchDay@cchmc.org.