Father Fights Sickle Cell’s ‘War on the Inside’ to Spend More Time with Family

By Benjamin Waldrum

“Spending time with family is the most important thing to me,” he said.

It’s a feeling that’s deeply embedded in his own experience. Sanders grew up playing multiple sports in his hometown of Waldo, Arkansas. It was something his mother encouraged.

At some point, his mother realized something was wrong with his health, and that started a series of hospital and emergency room visits. It was about a two-hour drive to Arkansas Children’s from Waldo.

“My mom, Pamela, tried to make sure I lived a normal life because she didn’t want me to feel any different from other kids,” said Sanders, who grew up playing baseball, football and basketball. “She made sure I stayed hydrated and didn’t overdo it.

“I had a normal childhood until it was time to go to the emergency room,” he said. “Family members knew what was going on, but not everyone else.”

Sanders has sickle cell anemia, sometimes called SS sickle cell because of the two “S” sickle cell genes inherited from each parent. It is the most severe form of the disease.

For Sanders, this means many painful episodes each year. He takes a pain pill every day, and another if the pain is intense. He also tries to ease his pain with heating pads and hot showers.

“Living with sickle cell — it’s just not a one-day thing. When people look at you, they don’t know what’s going on,” he said. “They just think you’re another human being because we look fine on the outside, but it’s a war on the inside. I could be fine now, or we could be laughing and talking, and I’m hiding my pain.”

Sanders has worked since he was 16, but like many other people with sickle cell, it was difficult for him to maintain employment due to the severity of his pain that forced him to miss work.

Some doctors don’t know about sickle cell, and therefore, they don’t how to manage the pain in a safe way. For Sanders, it became a particularly scary experience.

“I had pneumonia in both of my lungs. My doctor couldn’t figure out what was going on,” he said. Eventually an ambulance drove him to the airport, and he was put on a flight to Little Rock.

“Next thing I know, I’m at UAMS,” he said. “That’s when I met everyone.”

That was three or four years ago, by Sanders’ estimate. Today, he lives in Texarkana and makes regular visits to the UAMS Sickle Cell Clinic.

“Before I started coming to the clinic, it was rough,” he said. “I was going to the ER three to four times a month and was being admitted to the hospital six to seven times per year. After my first year coming to the clinic, I went to the ER once or twice but wasn’t admitted to the hospital all year.”

Every eight weeks, Sanders receives apheresis treatments that remove some of his red blood cells and replace them with new ones. It’s one way to help treat sickle cell and prevent clotting.

“That allows me to do things I couldn’t do before,” he said. “I can live my life better and do things with my son and daughter. Do things with my family.”

These days, Sanders is focused on his family — fiancée Chelsea, son Trae’vion, 11, and a new addition — baby Madisyn, born in April. His mother and sisters live nearby, too. Together with his close friends, they’ve formed a tight support system.

Trae’vion and Madisyn only carry the trait for sickle cell, which is a good thing, Sanders said. And thanks to the treatment he receives at UAMS, he can keep up with their energy.

“Trae’vion wants to play sports, go outside, go fishing,” Sanders said. “If I tell him we’re going to go fishing, I’m not worried about breaking my promise to him.”

As a nurse left the room after tending to Sanders, he said, “I’m glad that I have good nurses like her. It’s good that they have this program now, because after you leave Children’s [pediatric sickle cell clinic], it’s nothing out there besides a PCP who really doesn’t know too much about sickle cell. You just tell a doctor what’s wrong and what’s going on with you, and they just try their best to figure out what to do.”

Sanders said he’s glad the state has an adult program. He’s thankful for the clinic and its staff, especially ‘Miss Stella’ as he calls Stella Bowers, RN.

“It’s tough to deal with sickle cell as a child, because you don’t know what’s going on with yourself, and you were just hurting,” he said. “Now that I’m older, I know what’s going on, and what I can do about it. If I have questions or if I’m in pain, they have an answer at the sickle cell clinic. I rate them 100 out of 100.”