The Unspoken Battles of Sickle Cell Trait, Part 1

Yolanda Evans

Yolanda Evans was born into devastating circumstances. “My mom gave me away at 2 weeks old. I was born in a group home with an elder lady, and I didn’t really know what was going on with me. I was sick a lot. My bones were fragile, and I was always falling and breaking them,” she said. Yolanda reflected on being at Kosair Children’s hospital throughout childhood.

It was after an accident in her teens that she was taken to the hospital and learned she had sickle cell trait. She left the hospital and never really thought about it or studied the disorder. Not to be confused with sickle cell disease, sickle cell trait is when a child inherits a normal gene and a sickle cell gene, according to the CDC. Sickle cell trait can never turn into sickle cell disease, but the trait can be passed down. A child can develop sickle cell disease if both parents have the trait.

Most people with sickle cell trait experience no symptoms, and that’s why it can go undetected. Yolanda is part of the rare group that does experience symptoms. “It was when I turned 15 and got pregnant that I started learning about the blood disorder,” said Yolanda, “Complications started coming. My son was born when I was 16 and he has sickle cell trait. I had my second child at the age of 18. They thought my daughter would be deformed from having sickle cell disease.”

Yolanda and her daughter

Yolanda underwent blood testing and the agony of waiting to hear about her daughter. “Thankfully, she didn’t have the disease. She also has the trait,” she said. “This is something that could have been very scary for my children. I was unaware.” Sickle cell trait testing at birth was not widely provided until 2006.

Yolanda experiences pain crises in the form of cramps and urinary tract infections. “Rest and staying hydrated helps. I tell people I have to sleep for 9 hours a day. Sometimes I schedule off with my job to rest. They know what’s going on and are supportive,” she said. She knows when a pain crisis is usually coming because her platelet count gets low.

In comparison, people with sickle cell disease have “bizarre pain. It almost feels like having a baby. It’s so bad you can’t tolerate it and need to go to the emergency room,” said Yolanda. Patients with sickle cell disease typically require blood transfusions to keep their blood from sickling.

Her connection to sickle cell unfortunately goes further. Yolanda had a childhood friend in her group home who died from sickle cell disease. “Her and I would always talk about the different things she was going through. I would relate to some of the pain. It makes me emotional. It’s something really dear to my heart,” said Yolanda.

(Story continues in Part 2)