NFL running back Tevin Coleman and his wife Akilah are proud parents of 5-year-old twins, Nazaneen and Nezerah. Shortly after the twins’ birth, their daughter, Nazaneen, was diagnosed with sickle cell disease (SCD), a red blood cell disorder that can prevent the body’s organs from receiving oxygen they need.
While healthy red blood cells flow easily through the blood vessels, carrying oxygen throughout the body, sickled red blood cells are stiff, sticky and don’t move as freely. And as a result, they can pile up, block blood flow, and keep healthy red blood cells from getting where they need to go. Sickled red blood cells also break down more easily, leaving fewer in the body to carry oxygen. This can result in anemia, a condition causing people to feel weak and tired.
SCD is genetic and is inherited when a child receives one gene from each parent. An eight-year veteran running back in the NFL, Tevin has experienced his own challenges as a carrier of the sickle cell trait. And now, the Colemans are sharing their personal story to help educate others about SCD, a condition which affects approximately 100,000 Americans and 1 in 365 African American births per year, according to the CDC.
The Colemans are tireless advocates for the importance of communicating with healthcare providers, seeking early and proactive care and understanding the complexities of caring for a young child with SCD.
We spoke with them about the work they’re doing to increase awareness of sickle cell disease, particularly in the Black community. Here is their story.
We knew sickle cell was a possibility when we were pregnant with our twins, so we made sure they received the proper blood tests when they were born. We were directed to a specialty center for blood disorders, where they diagnosed Nazzy with sickle cell disease. It was a scary experience for us, but we tackled it head on. And we were determined to find the best medical resources and treatment plan for our daughter.
As a family, we’ve developed a playbook for our daughter to help manage and mitigate the potential impacts of SCD. We communicate with Nazzy everyday, asking her how she feels and if she has any pain. We check her fingers, toes and eyes and take her to her doctors and care team regularly. If she complains about her legs or feet hurting, we have a spa day. That self-care helps ease some of the pain and fatigue that can come along with the disease.
It Takes a Village
When it comes to Nazzy’s care, the team goes beyond her physicians. We make sure her teachers, school staff, gymnastic instructors and anyone else involved in her care are aware of Nazzy’s sickle cell condition so that they can be mindful of things to look for and how to best support her. For instance, if it’s particularly cold, Nazzy needs to be insulated and wear her coat. If she complains of fatigue, we flag teachers to allow her additional time to rest.
We worked with our daughter’s doctors to develop a treatment plan that works for her, and it’s important for other families to do the same. Regular communication and routine visits with your child’s care team allow you to learn about SCD treatments and advocate for their needs. It’s helped us to learn about the disease and how best to manage it. And now, we’re able to be her strongest advocates.
Don’t Be Afraid to Ask Questions
There is no such thing as a dumb question when it comes to your child’s health and treatment plan, so ask them all. We also encourage parents and families to do their own research and find the right doctors that they are compatible and comfortable with. We built our network in Atlanta, and that’s why we call Atlanta home.
Honor your feelings of being scared or concerned about your child, but be proactive. We want other families to know they’re not alone on this journey. The sickle cell community includes warriors from all walks of life, but the disease disproportionately affects the Black community. That’s why we have to lean on each other and share information, knowledge and best practices.
We are proud to partner with Pfizer and we encourage everyone to visit SickleCellSpeaks.com to learn more about the resources available and hear from other individuals living with SCD.