But Sparks has endured a fair amount of pain, too: In early 2018, she lost her step-sister, 16-year-old Bryanna Jackson-Frias, to complications with sickle cell disease. “I remember seeing Bryanna and thinking, She should be thinking about boys and makeup and going to homecoming dances,” Sparks recalls in an interview with Parade.com. “Instead she was hospitalized three weeks out of the month. She always did it with a smile on her face, though, which was amazing.” Sparks joined forces with Aflac ahead of the launch of My Special Aflac Duck for sickle cell patients. Her goal is to help raise awareness for the disease itself and this program that can positively impact and support children fighting Sickle Cell Disease. “The My Special Aflac Duck is a social robotic duck that can really help the children that receive them express their emotions,” Sparks says. “The duck actually ‘quacks’ the emotion the child is experiencing and gives the caretaker or parent an indication of how they’re feeling.” In 2022, there will be a different customization of the My Special Aflac Duck for children with sickle cell. “Sometimes a patient with sickle cell can get a flare-up because of a weather change,” Sparks explained. “So this My Special Aflac Duck will come with a blanket because sometimes kids with sickle cell disease need those blankets so they don’t have flare-ups. It’s made with thoughtful pieces and interactions that will make a child’s experience easier and give them a sense of comfort.”
Helping people gain a better understanding of what sickle cell disease is
Before her step-sister came into Sparks’ family, Sparks says she didn’t know much about sickle cell disease. “After she passed away and while she was sick, we were doing a lot of different things for it and I was using my voice for sickle cell awareness, which was something she wanted,” Sparks says. “She wanted to be a fighter and warrior and advocate not only for herself but for anyone else dealing with the disease or support someone with the disease. This is a way for me to honor her and carry out that legacy.” One of the best ways for Sparks to do that is to raise awareness. “Sickle cells affect 100,000 Americans every year, and it’s mostly in the African American community,” she explains. “Our red blood cells are round. With sickle cell, they create a sickle shape which creates blockages in the bloodstream, which also means you can’t carry oxygen to the places in your body where it needs to go.” She explains that all of us breathe involuntarily all day long, and the oxygen in our body gets where it needs to go. “If there’s a blockage that can’t get it somewhere, who knows what will happen—often it causes a lot of pain.”
How to support someone living with sickle cell disease
If you know someone with sickle disease—or simply want to become an advocate—one of the first things you should know, according to Sparks, is that you can’t tell someone has sickle cell disease just by looking at them. “Because of that, there are some patients who feel like there’s a stigma around them. People will say they’re in a lot of pain, but someone will look at them and say they don’t see anything wrong them,” she explains. “So we definitely need more people having this conversation. Sickle cell is one of those things where if we don’t have the conversations, how will we ever progress forward to find ways to manage the pain?” Another issue with sickle cell is that it’s highly individualized. “Some people have minor flare-ups, while others have major flare-ups and have to be hospitalized three weeks out of the month. It just depends on the person.” Triggers for flare-ups can vary, too. “Some flare-ups are caused by stress, the weather, or both. It’s one of those things that you really have to take by day, which can be really hard.” Sparks says that in order to support someone with sickle cell disease, it’s important to first arm yourself with information. “The more information we can find through teachers, community outreach, or webinars—that can help us get more information and have the important conversations.” She adds that being able to be open enough to say, “Hey, this is what someone I love is going through, do you know someone who’s going through it too?” can not only help them find a larger community of support but help encourage more research. Keeping things light and not over-focusing on their illness can help, too. “With Bryanna, I would ask her what she was looking forward to. She had been living with sickle cell her entire life, so she already knew what she was going through, and I really didn’t need to ask her about that. I asked if she was doing OK, but I tried to keep our conversations light.” Above all, Sparks advises keeping three things in mind: “Have a great ear to listen, a heart that’s open, and be willing to understand that everyone’s different,” she says. Next up: Jordin Sparks Talks #MomTruths and Mom Guilt
