Sickle cell disease — how one Black family is coping with the illness and inspiring others along the way

NFL running back Tevin Coleman, a Tinley Park native and former Oak Forest High School football star, had no idea growing up why he passed out twice from the heat during his childhood Little League practices.

The reason was finally discovered following a medical diagnosis when he was an All-American running back at Indiana University at Bloomington: he had inherited the sickle cell gene.

“I couldn’t finish practices because I was so dehydrated. My muscles would lock up and cramp,” Coleman said.

He started making sure he drank enough liquids and got more massages to avert muscle pulls, and to stop the pain and burning he had experienced.

The disease can lead to complications that start in early childhood such as brain strokes, sensitivity to altitude and high heat, reduced blood flow to the kidneys, liver and spleen, and sudden, intense pain flares in the chest, legs, arms, stomach and lower back.

September is National Sickle Cell Awareness Month. The illness is the most common inherited blood disorder in U.S., according to the NIH. People with the sickle cell trait have inherited a sickle cell gene from one parent and a normal gene from the other parent. (To have sickle cell disease, a person must inherit two sickle cell genes — one from each parent.)

The blood disorder occurs among about one of every 365 Black births and one of every 16,300 Latino births, according to the U.S. Centers for Disease Control and Prevention. Sickle cell disease affects about 100,000 people in the United States, including one in 325 who are Black, and an estimated 2,500 people in the greater nine-county Chicago metro region.

The sickle cell gene that Coleman carries makes him more sensitive to high heat and altitude, even though he doesn’t have sickle cell disease.

Coleman’s wife Akilah, who is African American and Palestinian, also inherited the sickle cell trait, but she experiences no symptoms.

When the couple had children — fraternal girl and boy twins — four years ago, they learned that their daughter, Nazaneen, has sickle cell disease, and that her brother, Nezerah, lives with the sickle cell trait like his parents.

The couple decided to share with the Sun-Times their insights and the resources they’ve found at sicklecellspeaks.com to help other parents cope with raising children with sickle cell disease.

To have sickle cell disease, a person must inherit two sickle cell genes — one from each parent. The blood disorder occurs among about one of every 365 Black births and one of every 16,300 Latino births, according to the U.S. Centers for Disease Control and Prevention. Sickle cell disease affects about 100,000 people in the United States, including one in 325 who are Black, and an estimated 2,500 people in the greater nine-county Chicago metro region.

The Colemans encourage parents to get their children tested as early as possible if they don’t know their status. The disease can lead to complications that start in early childhood such as brain strokes, sensitivity to altitude and high heat, reduced blood flow to the kidneys, liver and spleen, and sudden, intense pain flares in the chest, legs, arms, stomach and lower back.

“We want to make sure people understand the importance of early intervention,” Akilah said. She and her husband share these tips for parents:

• Everyone is different, so each person’s symptoms will be, too. The top priority is to take your child to routine checkups, regardless of his or her condition at the time of the doctor’s visit. “Ninety percent of our daughter’s doctor’s appointments are when she’s perfectly healthy,” Akilah said.

• Watch for discoloration in your child’s eyes, since yellowing is a possible sign of jaundice.

• Teach your child to communicate when he or she is in pain, and to describe it. For Nazaneen, her body gets hot, she cramps up and she feels pain in her joints and legs.

• Build a relationship with everyone who your child will have contact with in school and activities.

“The second we know she’s starting a program — gymnastics, ballet, school — we meet the teachers and others she’ll interact with,” Akilah said. Explain what’s a healthy room temperature for your child, and make sure to bring a water bottle in case of dehydration.

• Keep advocating, even when it’s uncomfortable. “If we don’t feel like we’re being heard, we elevate the complaint,” Akilah said. “In pre-school, we elevate it to whoever is [in charge] of the school. We’re not scared of that. We’re not feeling intimidated. I’m a mother. I didn’t go to school for this. But I know that I’m a concerned parent.”

• Stay positive.

“There’s always a better tomorrow,” Akilah said. “We throw a party every time — with a cake and a candle and a present or two — when she comes home [from the hospital] after having a crisis.”

“Know your status. Be your own voice,” Akilah said. “We want people to be confident and have providers who listen to them. You can choose your medical provider. You’re not alone and it’s something we can all deal with.”

There’s no drug cure for sickle cell disease. Though bone-marrow transplants have cured some people with sickle cell disease, the transplants are not readily available because the stem cells and bone marrow must come from matching relatives.

More hopeful is that the U.S. Food and Drug Administration has approved three drugs in the past five years to help sickle cell disease patients. One treats the root cause of the disease, the other two treat pain complications. Researchers continue to test new treatments, said Dr. Santosh L. Saraf, an associate professor of medicine at the University of Illinois at Chicago who has spent much of his career researching the disease.

A major issue that has remained consistent for 30 years, Saraf said, is that the median survival age has remained at 48.

The Coleman family has decided to focus on what they can do, and they’ve even turned their daughter’s circumstances into motivation. During a particularly trying time three years ago, when Tevin was playing for the San Francisco 49ers, daughter Nazaneen had been hospitalized and unable to travel after she had had an acute sickle cell pain crisis.

So when Nazaneen finally saw her dad play, in her first time at a professional football game, Tevin scored four touchdowns.

Though Nazaneen was only two years old at the time, she quickly understood the game.

“She was cheering for her dad,” mom Akilah said. “It was one of his biggest games. He drew from that strength.”

For information about sickle cell disease initiatives and advocacy, visit sicklecelldisease.org.