Akilah Coleman calls her husband, NFL running back Tevin Coleman, her twin flame. The two both come from immigrant backgrounds, are from the midwest, and they both are carriers of the sickle cell trait.
Sickle cell disease is a group of inherited blood disorders that causes blood cells to become hard, sticky and morph into a crescent moon shape, making it difficult for them to pass through the vessels and carry oxygen throughout the body.
While Akilah wasn’t affected carrying the trait, for Tevin, playing a high intensity sport caused complications.
“I had issues and I didn’t find out until college,” he tells ESSENCE. “I was cramping. My body was locking up. When I did find out, they tried to protect me by keeping me out of things but I still was having symptoms. I just had to take it onto myself.”
Educating himself presented a challenge. At the time, the information about sickle cell disease wasn’t diverse.
“The information that was out there was always really negative,” Akilah recalls. “It always seemed [like it was something to be] shunned. You don’t really talk about it. You don’t bring it up.”
But when she gave birth to fraternal twins in 2017, a boy and girl, the necessity of the conversation became critical. The Coleman’s daughter, Nazaneen, now four years old, was diagnosed with sickle cell disease at six months old.
The early diagnosis gave the family time to plan and prepare for how they would manage her care.
“For her, we really try to take a different approach to sickle cell disease because of the true reality of it. We just really want her to know that she can still meet her goals and still do the things that she loves to do. But we just have to protect her and stay proactive in that protection. We can’t wait until a crisis comes on and we’re in the ER.”
Being proactive means making sure Nazaneen stays hydrated and keeping her teachers and activity leaders informed and aware of her condition and of the measures required to keep her safe.
“We need to have an open line of communication, even down to ‘Are any of the other kids sick in the classroom?’” Akilah says. “If there are ever sick kids in the class, please tell me because it’s vital. A simple cold to another child means she’s in the hospital and might have acute chest syndrome. If it’s too hot, you don’t go outside at school. It’s inside play.”
For the couple, it’s paramount that despite such adjustments, their daughter enjoys a good quality life.
“The most important thing to me with her is protecting her innocence and her childhood,” Akilah says. “I don’t want her to look back and feel like she had a childhood filled with nonstop pain and she couldn’t trust her parents to know what’s good for her.”
The Colemans have partnered with Global Blood Therapeutics (GBT) and Sickle Cell Speaks to ensure that other families are able to find resources, locate medical professionals and develop their own playbook for living with sickle cell disease.
According to the CDC, it is estimated that one out of 365 Black or African-American babies are born with sickle cell disease and there are more than 100,000 people in the United States living with it. Sickle cell is predominantly found in people with ancestry from sub-Saharan Africa.
Black people and the American healthcare system have a historic and ongoing tense relationship with one another, and it’s been especially tough for Black patients with sickle cell disease. For the Colemans, they’ve experienced that through doctors’ hesitancy to listen.
“When my husband was playing for San Francisco, he was at an away game and our daughter had gotten pretty sick. I had to take her to the hospital and they could not identify what was going on,” Akilah says. “I told them multiple times, she has sickle cell disease, contact her doctors in Atlanta. And they really put us through the ringer in a sense because they just wouldn’t listen to what I was saying.”
She wanted to partner with Sickle Cell Speaks so that other parents and patients don’t find themselves in similar situations.
“What I hope to do is change the narrative so that people can become their own advocates,” she says. “I want you to feel that you can use your own voice. You have the resources. You know what’s best for you. You know how you feel. You know you’re in pain. And if you are in pain, speak up about that.”
The confidence to speak up and advocate for yourself only comes with being equipped with the right information about your health.
As a family of carriers (the couple’s son Nezerah is also a carrier) and a daughter with the disease, Tevin wants other families living with sickle cell to know that they’re not alone and to be vigilant about their health, not waiting until they’re in crisis to seek help. For Akilah, raising awareness about sickle cell means educating the entire community.
“Whether you have sickle cell or not, check out SickleCellSpeaks.com,” she says. “This is something that is affecting our community and we just really all need to be aware of it.”