NFL player Tevin Coleman on parenting a child with sickle cell disease
- New York Jets running back Tevin Coleman and his wife Akilah are carriers of the sickle cell trait.
- The couple’s four-year-old daughter, Nazaneen, lives with sickle cell disease.
- To raise awareness, they talk about sickle cell disease.
While playing college football at Indiana University, New York Jets running back Tevin Coleman began to experience the effects of carrying sickle cell trait (SCT), an inherited blood disorder that affected 8-10% of African Americansaccording to the American Society of Hematology.
“I worked really hard and had a lot of symptoms – cramping and my body was freezing up and I couldn’t finish any workouts,” Tevin told Healthline.
Although most people with TSS have no symptoms, heatstroke, dehydration, and muscle breakdown can occur in those who engage in strenuous exercise.
“If a porter is extremely challenged like a football player would be, and they play for a very long time in hot weather, they can be affected. However, there are variations,” Dr Dana Shania hematologist at Lenox Hill Hospital, told Healthline.
For example, Tevin’s wife, Akilah, is also a carrier of TSS, but she hasn’t experienced any symptoms.
“I always knew I had the trait; my mom made sure I knew I had it,” Akilah told Healthline. “I just thought it was part of my genetic makeup and I didn’t know the possible seriousness down the line.”
Because the Colemans both carry the gene, any child they have together has a 25% chance of being born with sickle cell disease (SCD), a serious blood condition that causes the production of abnormal hemoglobin, which helps carry blood. oxygen throughout the body. Complications of SCD include acute chest syndrome, overt stroke, silent stroke, learning disabilities, and organ damage.
“The disease doesn’t get worse over time, but as most organs – the heart, the kidneys, the lungs – get less and less oxygen, they may start to function less well. The spleen can be so affected that it has no function,” Shani said.
When the Colemans had fraternal twins in 2017, their daughter Nazaneen was diagnosed with SCD and their son was born with the trait. Since 2006, all US states have been required to provide universal newborn screening for SDC.
“This provides the opportunity for early intervention, such as penicillin prophylaxis to prevent pneumococcal disease, and education of family and/or caregivers,” Dr. Kim Smith-Whitleyhead of research and development at Global Blood Therapeutics, told Healthline.
When their daughter was diagnosed, the Colemans made it a priority to learn as much as possible about the disease.
“It’s hard because [Nazaneen] doesn’t understand sickle cell right now because she’s so young, that’s why we just have to communicate every day and ask her how she’s feeling, if she’s in pain,” Tevin said.
They focus on keeping her hydrated, well-nourished, and well-rested; something Akilah calls her “beauty sleep”. The couple also insist on encouragement.
“Every time she goes to the doctor or the hospital, afterwards we make sure she throws a party with a cake and a present to open – something she has to look forward to after those visits and so she’s always happy,” Colman said.
Adopting a positive attitude is also their way of helping the family cope.
“Drepanocytosis does not stop her, she has some [limitations] and as long as we stay proactive in front of her, she can still do whatever she wants to do. I want her to always feel capable of living a fulfilling life,” Akilah said.
She also works hard to protect Nazaneen’s sanity.
“I don’t want her to have to get over her childhood or feel like it was traumatic or that she didn’t have parents who were her advocates…or that she had the feel like she’s a burden on us. I want her to understand that this is part of who she is,” she said.
Tevin and Akilah have teamed up with Global Blood Therapeutics and sickle cell disease speaks to raise awareness about sickle cell disease, advocate for early and proactive care, and share advice for parents and children affected by sickle cell disease.
“A lot of parents and children don’t ask for help unless they’re going through a crisis and it’s too late by then; their organs are quite affected,” Tevin said.
Since SCD occurs in approximately
“It’s good to talk about it. It’s okay to ask for help. And I want them to know they’re not alone in this,” Tevin said.
However, it took him time to express himself. When his daughter was first diagnosed with SCD, he thought staying silent would protect her. As Nazaneen grew and learned more about the SCD, he felt the need to be heard.
“I feel like I need to speak up about this and I need to be that voice for my daughter and for other families going through this because I want to be a helping person in this world,” Tevin said.
Akilah encourages parents to contact their child’s doctor because SCD affects everyone differently. They take advice from Nazaneen’s doctor about what they can do at home.
They learned to check his spleen, fingers, toes and eyes, as well as measure his level of pain. They also prioritize preventative maintenance by ensuring their daughter has routine visits with her doctor even when she is feeling well.
“[We] try to stay in front and know how to deal with it before it becomes something extremely serious,” Akilah said.
Smith-Whitley said learning the SCD can help parents set their children up for success.
“Look for doctors and nurses who understand the needs of people with SCD and who you feel comfortable communicating with frequently. Regular communication and routine visits with your child’s healthcare team is the key. opportunity to learn about the latest SCD treatments and advocate for their needs Scheduling routine labs and screening appointments for you or your child is essential to maintaining care, as is knowing your lab numbers. child,” she said.
The Colemans are hopeful about the future of children with SCD.
“I love the generation [Nazaneen] happens because it changes. It’s not like in the 90s where you didn’t have resources, there’s a sense of community now… where you can find resources and find your community and what’s best for you,” said Akilah.
Shani added that although sickle cell disease is a lifelong disease, she said people with the disease are living much longer than before due to increased awareness and medical attention towards treatments. improved.
“It was neglected and there was no interest for a long time. For many years, because the medical profession had little to offer [SCD patients]we gave them painkillers,” she said.
Smith-Whitley agreed and pointed out that although SCD has been well understood for several decades, there are too few treatments.
“Therapies available for SCD focused on symptom management and did not address the root cause of the disease,” she said.
However, more drugs are FDA-approved, she added.
Over the past five years, the American Society of Hematology has pushed to bring more attention to the disease. Bone marrow transplants and gene therapy are treatments that Shani says will continue to show promise.
“Younger patients today will have a much better outcome,” she said.