NFL player Tevin Coleman and his wife, Akilah, who both carry the trait for sickle cell disease, are speaking out on their experience in an effort to raise awareness, and reveal what it’s like to parent their daughter, Nazaneen, 4, who was officially diagnosed with the disease.
The New York Jets running back recently spoke with Healthline about his journey with the sickle cell disease trait, sharing that he noticed his symptoms while playing college football at Indiana University. Though carriers of the blood disorder can go without symptoms, those who engage in intense exercises sometimes experience issues like dehydration or heatstroke.
“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 shared.
Since Coleman’s career requires him to not only participate in high-level exertion but also play in high temps, his onset of symptoms is more severe. However, his wife experiences little to no symptoms.
“I always knew I had the trait; my mom made sure I knew I had it,” Akilah shared with Healthline. “I just thought it was part of my genetic makeup and didn’t know the possible severity down the line.”
According to Healthline, because both parents carry the gene, any child they have would be subject to a 25% chance of also carrying the gene. The disease is described as a “blood illness that causes the production of abnormal hemoglobin, which helps carry oxygen throughout the body.”
The pair gave birth to their twins, Nazaneen and Nezerah, 4, in 2017. Soon after Nazaneen was officially diagnosed with sickle cell disease, while her brother only carries the gene.
“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. 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.
“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 she can still live a fulfilling life. 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,” Akilah shared.
Coleman admitted that at first, he kept his daughter’s prognosis under wraps, in an attempt to protect her. However, he soon realized that voicing his experience could greatly impact other families, so Tevin and Akilah have now partnered with groups Global Blood Therapeutics and Sickle Cell Speaks to be more involved in advocating for the rare disease.
“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. 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. 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.