- New York Jets running back Tevin Coleman and his wife Akilah carry the sickle cell trait.
- The couple’s four-year-old daughter Nazaneen lives with sickle cell disease.
- To spread awareness, they are speaking out about sickle cell disease.
During his time as a college football player at Indiana University, New York Jets running back Tevin Coleman began feeling the effects of carrying the sickle cell trait (SCT), an inherited blood disorder that affects 8 to 10 percent of African Americans, according to the American Society of Hematology.
“I worked really hard and I was having a lot of symptoms – cramping and my body locking up and I couldn’t finish any practices,” Tevin told Healthline.
While most people with SCT don’t experience symptoms, heat stroke, dehydration, and muscle breakdown can occur in those who engage in intense exercise.
“If a carrier is extremely challenged like a football player would be, and they play for a very long time in hot weather, they may be affected. However, there is variation,” Dr. Dana Shani, a hematologist at Lenox Hill Hospital, told Healthline.
For instance, Tevin’s wife Akilah is also a carrier of the SCT, however, she has not experienced symptoms.
“I always knew I had the trait; my mom made sure I knew I had it,” Akilah told Healthline. “I just thought it was part of my genetic makeup and didn’t know the possible severity down the line.”
Because the Colemans both carry the gene, any child they have together has a 25 percent chance of being born with sickle cell disease (SCD), a serious blood illness that causes the production of abnormal hemoglobin, which helps carry oxygen throughout the body. Complications of SCD include acute chest syndrome, overt stroke, silent stroke, learning disabilities, and damage to organs.
“The disease doesn’t worsen over time, but because most of the organs – the heart, the kidneys, the lungs – are getting less and less oxygen supply, they may start functioning less. The spleen can get so affected that there is no function of the spleen,” said Shani.
When the Colemans had fraternal twins in 2017, their daughter Nazaneen was diagnosed with SCD and their son was born with the trait. Since 2006, all states in the U.S. are required to provide universal newborn screening for SCD.
“This provides the potential for early intervention, such as penicillin prophylaxis to prevent pneumococcal disease, and education for the family and/or caregivers,” Dr. Kim Smith-Whitley, head of research and development at Global Blood Therapeutics, told Healthline.
When their daughter was diagnosed, the Colemans made it their priority to learn as much about the disease as possible.
“It’s hard because [Nazaneen] doesn’t understand sickle cell right now because she’s so young, so that’s why we have to just communicate every day and ask her how she feels, does she have any pain,” Tevin said.
They focus on keeping her hydrated, fed well, and properly rested; something Akilah calls her “beauty sleep.” The couple also stresses encouragement.
“Anytime she does go to the doctor or to the hospital, after, we make sure she has a party with cake and a present for her to open – something she has to look forward to after those visits and so she’s still happy,” said Coleman.
Practicing a positive attitude is also their way of helping the family cope.
“Sickle cell does not stop her, it has some [limitations] and as long as we stay proactively in front of it, she can still do everything she wants to do. I want her to still feel like can still live a fulfilling life,” said Akilah.
She also works hard to protect Nazaneen’s mental health.
“I don’t want her to have to recover from her childhood or feel like it was traumatizing or that she didn’t have parents who were her advocates…or feel like she’s a burden on us. I want her to embrace that this is part of who she is,” she said.
Tevin and Akilah partnered with Global Blood Therapeutics and Sickle Cell Speaks to raise awareness of SCD, advocate for early and proactive care, and share advice for parents and children impacted by SCD.
“A lot of parents and children don’t seek help unless they’re going through a crisis and it’s too late by that time; their organs are pretty affected,” said Tevin.
Because SCD occurs among about
“It’s okay to speak about it. It’s okay to seek help. And I want them to know that they’re not alone in this,” said Tevin.
However, it took him some time to speak out. When his daughter was first diagnosed with SCD, he thought staying silent would protect her. As Nazaneen got older and he learned more about SCD, he felt the drive to be vocal.
“I feel like I have to talk about it and I have to be that voice for my daughter and for other families that are going through it because I want to be a person that helps other people in this world,” said Tevin.
Akilah encourages parents to communicate with their child’s doctor because SCD affects everyone differently. They take guidance from Nazaneen’s doctor about what they can do at home.
They learned how to check her spleen, fingers, toes and eye, as well as how to gauge her pain levels. They also prioritize preventive maintenance by ensuring their daughter has routine visits with her doctor even when she’s feeling well.
“[We] try to stay in front of it and know how to address it before it becomes something extremely severe,” said Akilah.
Smith-Whitley said learning about SCD can help parents set their children up for success.
“Seek out doctors and nurses who understand the needs of people with SCD and who you feel comfortable communicating with frequently. Regular communication and routine visits with your child’s care team are an opportunity to learn about the latest SCD treatments and advocate for their needs. Scheduling routine labs and screening appointments for you or your child is critical to maintaining care, as is knowing your/your child’s lab numbers,” she said.
The Colemans feel hopeful about the future for children living with SCD.
“I love the generation [Nazaneen] is coming into because it’s changing. It’s not like the 90s where you don’t have resources, there’s a sense of community now…where you can find resources and find your community and what’s best for you,” said Akilah.
Shani added that although SCD is a lifelong condition, she said people with the disease live much longer than they did in the past due to increased awareness and medical attention toward improved treatments.
“It was neglected and there wasn’t interest in it for a long time. For many years, because the medical profession didn’t have much to offer [SCD patients], we gave them pain killers,” she said.
Smith-Whitley agreed and pointed out that despite SCD being well understood for several decades, there were too few treatments.
“Available therapies for SCD were focused on managing symptoms and did not address the root cause of the disease,” she said.
However, more medicines are being FDA approved, she added.
In the last five years, the American Society of Hematology has pushed to bring more attention to the disease. Bone marrow transplants and gene therapy are treatments that Shani believes will continue to provide promise.
“Younger patients today will have a much better outcome,” she said.