Insider Magazine recently published an article discussing the SCD journey of NY Jets running back Tevin Coleman and his wife, who both live with sicklecell trait and raise a daughter with sickle cell anemia. Read it here:

New York Jets running back Tevin Colemandidn't know that he carried sickle-cell disease until he was in college. That's when the rigorous training required for his professional-football career brought his medical condition to the forefront.

"High-level sport was hard for me," Coleman told Insider.

Carriers for sickle-cell disease have what's called sickle-cell trait, which occurs when a person inherits one sickle-cell-disease gene and one healthy gene. In most cases, people with the trait don't notice symptoms, but athletes with the trait like Coleman may have an increased risk for heatstroke and muscle breakdown after intense exercise, according to the CDC. Coleman needed to emphasize hydration and rest to continue his career.

"I was just trying to understand sickle-cell trait and sickle-cell disease," Coleman said. "I really have to be proactive in my care."


A new diagnosis

Coleman's wife, Akilah, grew up knowing that she had the trait. Carrier status, which affects 1 in 13 Black people in America, was just a fact of life.

"I just thought it was part of my genetic makeup, nothing more, nothing less," she said.

When she married Coleman, they knew that their risk of having children with sickle-cell disease was high. Their children would have a 50% risk of inheriting sickle-cell trait and a 25% risk of developing sickle-cell disease. Shortly after birth, the couple's daughter, 4-year-old Nazaneen, was diagnosed with sickle-cell disease. The condition affects how the body carries oxygen throughout itself. It causes symptoms including pain, disease, and increased stroke risk. Nazaneen had a lower birth weight and heart rate than her twin brother, Nezerah, so the diagnosis was not a surprise.

"We knew there was something going on," Akilah said. "The positive is that we had an early intervention."


Living with chronic disease

The twins' first year was the most difficult. Coleman had to travel for his NFL career and leave his family at home.

"It was very hard at first," Coleman said. "Because of the season, my daughter had to stay home and get the extra care that she needed."

Since then, Akilah has found unique ways to cope with her husband's intense travel schedule.

"We pull up YouTube on the TV to watch interviews and plays, so they can see him," she said.

She spent time learning what Nazaneen's baseline health is so that she can quickly get medical care when something is amiss.

"If I see a sniffle or she's holding her arm a certain way, we're instantly figuring out what's going on," Akilah said.

Today, Nazaneen takes gymnastics and swimming classes.

"Even though she has complications, we want her to live as normal as possible," Coleman said. "For Nazaneen, it's important to know that sickle cell limits us, but doesn't stop us. She can still thrive as long as we protect her."

Advocating for other families

Today, a larger portion of the population knows about sickle-cell disease and sickle-cell trait compared to when Coleman and Akilah were young. Continue...