June 19th 2023.
On World Sickle Cell Day, Tevin Coleman and his wife, Akilah, are doing their part to break the chain between the Black community and sickle cell resources. The Colemans, who both carry the sickle cell trait, are passionate advocates for Black healthcare and are starting with the sickle cell community, which represents 8 to 10% of African Americans.
"Sickle cell disease is a rare, inherited blood disorder that can cause lifelong health challenges," Dr. Kim Smith-Whitely, site head and advisor of scientific and clinical affairs at Pfizer, explains. "Since 2006, all states in the U.S. have been required to provide newborn screening for SCD, which is an important step to giving parents the information they need to plan for their child’s health."
The proud parents of twins Nazaneen and Nezerah, 4, are sharing their own stories on platforms like Sickle Cell Speaks and helping to build and strengthen global sickle cell communities.
Tevin began experiencing fatigue and body cramping during his college football days at Indiana University. He tells Black Enterprise that he couldn't even finish practices and had to push himself until he would pass out. After his coach, who is Black, suggested he get tested, Tevin discovered he had the gene and began taking time to learn more about it.
Nazaneen was diagnosed with sickle cell anemia, a form of hemoglobin that causes red blood cells to become rigid. Akilah, on the other hand, doesn't experience the effects of having the trait, but she stands powerfully beside her husband and daughter.
"Sickle cell really lacks representation," Akilah says. "We want people to see my husband when he is making the touchdowns and big plays and to associate him with sickle cell. We want to bridge the gap between the resources and those living with the disease."
Tevin echoes his wife's insistence on normalizing the conversation around sickle cell, urging those living with SCD to educate those around them. While Tevin travels for football, Akilah and their daughter are in Atlanta, where her healthcare is handled by the best doctors.
The power of love and family is evident, as Akilah talks about the trial and error of finding the best healthcare for her daughter. She stresses the importance of finding a community where you can get the support you need.
Health disparities related to race and socioeconomics are major factors why patients affected by sickle cell disease don't receive adequate pain management. Physicians and nurses may hold false beliefs that SCD patients are drug-seekers or addicts, and this can further pose emotional and social challenges.
Tevin and Akilah Coleman are working hard to ensure that those living with SCD get the recognition, care, and resources they need. They're helping to build and strengthen sickle cell communities and break the chain between the disease and the Black community.
On World Sickle Cell Day, NFL player Tevin Coleman and his wife, Akilah, are standing up to break the chain between sickle cell resources and the Black community. The Colemans, both of which carry the trait for sickle cell disease, are passionate and outspoken champions for Black healthcare.
“Sickle cell disease 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.”
The proud parents of twins Nazaneen and Nezerah, 4, are putting their family story to use by helping to build and strengthen global sickle cell communities. They share their experiences on platforms such as Sickle Cell Speaks which helps to raise awareness and educate other people with the condition.
Tevin began experiencing fatigue and body cramping due to less oxygen to his muscles during his college football career at Indiana University. He tells BE that he couldn’t even finish practices, but he was determined to push through. Eventually, his coach, 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.
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 we’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 is a key factor in the couple’s successful management of Nazaneen’s condition. 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. Akilah emphasizes the importance of finding a community when planning a proactive plan, as a care team is just as important as the love and support of family.
Health disparities related to race and socioeconomics is a major factor why patients affected by sickle cell disease frequently do not receive adequate pain management. Physicians and nurses hold false beliefs that those living with SCD are drug-seekers or addicts and might misperceive their behaviors.
The Colemans are determined to challenge the stigmas and misconceptions that surround sickle cell disease and make sure that those living with the condition have access to the resources they need. They are using their own story to bridge the gap and help people affected by SCD to live a full life.
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