On World Sickle Cell Day, NFL player Tevin Coleman and his wife, Akilah, are breaking the chain between sickle cell resources and the Black community.
The Colemans, who both carry the trait for sickle cell disease, are passionate and outspoken champions for Black healthcare. And they are starting with the sickle cell community, which makes up of 8 to 10 percent of African Americans.
“Sickle cell disease (SCD) is a rare, and devastating inherited blood disorder that causes lifelong health challenges that adversely impacts the physical, mental, and socio-economic well-being of those living with the disease and their families,” Dr. Kim Smith-Whitely, site head, advisor of scientific and clinical affairs at Pfizer, told BLACK ENTERPRISE in a statement. “Since 2006, all states in the U.S. have been required to provide newborn screening for SCD, which is an important step to getting parents the information they need to plan for their child’s health.”
As a cohesive team, the proud parents of twins Nazaneen and Nezerah, 4, are helping to build and strengthen global sickle cell communities by sharing their own stories on platforms such as Sickle Cell Speaks
.During his time as a college football player at Indiana University, Coleman began experiencing fatigue and body cramping due to less oxygen to his muscles. He tells BE that he couldn’t even finish practices. But he took so much pride in his competitive edge that he endured until he would ultimately pass out.
As a result, Tevin’s coach at the time, who is Black, suggested that he get tested. The former San Francisco 49ers running back discovered that he had the sickle cell gene and began to take the time to learn more about his body. The rest is history.
Nazaneen was diagnosed with what’s commonly called sickle cell anemia, also identified as Hemoglobin S. It is an abnormal form of hemoglobin that carries oxygen in red blood cells and causes the red cells to become rigid, and sickle- shaped.
Akilah, on the other hand, doesn’t experience the effects of living with the trait. But this matriarch of the family is standing powerfully beside her beloved husband and daughter.
“Sickle cell really lacks representation. I want people to see my husband when he is making the touchdowns and big plays. I want you to see him and associate him with sickle cell. I want people to know that this is a safe space. We go through it too. Regardless of what’re doing in life, we represent sickle cell. We walk through this everyday. We want to bridge the gap between the resources and you,” Akilah tells BE.
Tevin echoes his wife’s insistence on normalizing the conversation around sickle cell. He advises those living with SCD to start “educating people around you that don’t have the trait or the disease. Just giving them the heads up so they can help you in certain areas.”
The power of love and family
While Tevin travels for football, his wife and baby girl are in Atlanta, where her healthcare is handled by the best doctors. It is never easy to be apart but the sacrifices are worth it.
“It was trial and error. We did try to travel with him and live in the cities that he played in, but we didn’t have the best experience. That was the flame. We had to make that sacrifice as a family,” Akilah says. She continued to stress the value of finding your community. When planning a proactive plan, a care team is just as important as the love and support of family.“It’s really hard with sickle cell. A lot of parents don’t really know how to go about it, know how to treat it, know how to help their child with sickle cell. We just want everybody to come together and just to tell their story so we can figure out a way to help each other move on,” Tevin explains.
Across the world, people are living with SCD and face significant misconceptions and stigmas, which can further pose emotional and social challenges by the disease.
For example, sickle cell anemia can cause tiredness as well as severe pain. When seeking pain management consulting, one must realize that this resource is just part of a larger system that is often stacked against Black people and their healthcare. How accessible is pain management for Black kids and adults living or caring for sickle disease? Health disparities related to race and socioeconomics is a major factor why patients affected by sickle cell disease (SCD) frequently do not receive adequate pain management: Physicians and nurses hold false beliefs.
“SCD patients are often perceived as drug-seekers or addicts and might display behaviors in interactions with providers that are misperceived as being characteristic of substance abuse,” according to an article published in The Clinical Journal of Pain.
With that being said, the Colemans are adamant about maintaining healthy communication with Nazareen and those around her so that her well-being is priority.
Proactivity at its finest
At first, Tevin and Akilah were hesitant to share their baby girl’s diagnosis with the world. They are now proud to instill confidence in Nazaneen, who has stood firmly in her bravery while at school. She would tell her teachers to call her parents if she felt any pain.
“Princesses need their beauty sleep,” Akilah would tell her daughter. To support their daughter, the Colemans developed a game plan to create relationships with doctors and find a medical network of resources who knew them and who they knew they could trust. Sickle cell is not one-size-fits-all, so the Coleman tribe is taking the proactive and preventative approach.
From spa days and rest to massages and healthy food consumption, Tevin and Akilah only want to protect their daughter through self-care practice and advocacy. Tevin makes it his business to maintain hydration, a healthy lifestyle, and mobility, thanks to the resources he receives in football and beyond.
“When she has her aches and her pains, we try to protect her innocence. I think that’s a huge part of raising Black children is protecting their innocence because society will try to force them to grow up sooner than what they deserve. They deserve to be children,” Akilah explains.
She continues: “We try to create a very healthy environment for her. Her healthcare is our healthcare. We tell her that it’s self-care. Whatever she needs, we tell her, “It’s OK if you’re tired, you sleep, you rest. You have nothing to prove.'”
Creating a safe and confident environment
In 2017, the U.S Food and Drug Administration (FDA) approved two new drugs to help treat sickle cell disease, the first in nearly 20 years. More recently, Pfizer acquired Global Blood Therapeutics for $5.4 billion to breathe new hope in building a pipeline of innovative sickle cell disease treatments.
“Thankfully, significant research into the mechanisms of SCD and the medicines to treat it have emerged in earnest over the past 10-plus years and with that we are gaining new, continual insights into the medical impact of this disease and the innovations needed to address it,” says Smith-Whitely.
Today, scientists and patient advocates continue to reach new patients and communities with the Colemans. As advocates, the determined family has previously visited hospitals and state houses to spread awareness about SCD and educate others on how to gain access to resources and exercise their rights.
“We have multiple goals that we’re trying to reach within our community,” Akilah says. “One of them is vocalizing how important it is to find the right healthcare team. There’s such a stigma on people of color in the medical system. We lack trust there. For us, I know this is our survival. We need our care team for our daughter.”
To reach a larger audience, the Colemans have partnered with Pfizer to speak freely and to create a safe and confident space. Akilah mentioned that some of the members of the team have met Nazaneen, making the partnership a more personable experience.
While Pfizer addresses long-standing disparities in treatment and care of those living, or caring for someone, with this disease, Tevin and Akilah are uplifting the Black community.
“If it affects one of us, it affects all of us,” says Akilah.