Living with sickle cell disease

Bathesheba Benson, a sickle cell warrior, keeps her eyes on the future

Bathesheba Benson knows hope and pain more than most. Known as Sheba, she’s among the estimated 100,000 people in the United States living with sickle cell disease.

Sickle cell disease turns soft and round red blood cells into hard and crescent-shaped cells that clump together, reducing blood flow.

Sheba’s first sickle cell crisis happened when at home in New Hope, Minnesota. She was just five years old and had a stroke. It was then that her family learned she had inherited the sickle cell trait from both of her parents.

“My parents kind of knew because I would swell up. They knew something was wrong, but they didn’t know I had sickle cell,” she says.

“I want to see the world. There’s so much to do. ” – Sheba Benson, a sickle cell warrior

Now thirty-seven years old, Sheba knows well the challenges facing ‘sickle cell warriors’ who shape their days, weeks, and years into a life that prevents pain and reduces crises to the best of their abilities.

Sometimes a crisis can’t be prevented. Certain factors, like extreme cold, elevate risks. Even something quite ordinary, such as five-minute walk to a nail salon, can ignite the spiral.

“Oh, my goodness, it’s so hard,” she says. “I have to plan life out ahead of time. I have to double think about my decisions that I take in life.”

One decision – staying in college to study childcare – came to halt when she was twenty-one years old. She suffered a second stroke. The event also triggered a bout of depression so she went with her mom to visit relatives in Ghana. 

“I feel healthier once I get blood in my system – I feel brighter, stronger and healthier – you can see it in my face – my sister says ‘you look better’.”

Sheba Benson – Sickle Cell Warrior

“I was depressed there, too, because I wasn’t doing anything and not going anywhere. So, I decided to come back to Minnesota,” she says.

A critical, lifesaving treatment through all of this is blood transfusion. Red cell transfusion increases oxygen in the blood, boosting her immune system and reducing a severe pain crisis, stroke or other life-threatening conditions. Sheba’s transfusions have been numerous throughout the years, including more intensive apheresis therapy.

“They always transfuse me when my hemoglobin is low. Sometimes they give me an apheresis transfusion when I’m very very sick. They place a tube in my neck or groin area, and then hook me up to a big machine where they exchange blood,” she explains.

The transfusion transforms her in moments.

“I feel a lot lot better, like instantly – I feel stronger instantly – I feel healthier once I get blood in my system – I feel brighter, stronger and more healthier – you can see it in my face – my sister says ‘you look better’.”

“I feel healthier once I get blood in my system.” – Sheba Benson receives blood transfusion when she has a sickle cell crisis.

Sickle cell warriors like Sheba rely on blood donors for this crisis mitigating and lifesaving therapy, which could be needed any day of the year. Finding a blood match beyond well-known blood types like A, B and O is essential.

The hardship of finding a match lessens with a more diverse blood supply. The most likely matches are with donors who are Black. And because blood compatibility decreases with each transfusion, ongoing diversity from new and regular Black donors makes the difference for Sheba and other sickle cell patients.

“My blood bags always have Red Cross on it,” she says. “Please donate because it really goes along way – it helps me, it helps other patients out there. If I could donate, I would donate. Please go out there and donate if you can.”

When feeling well, meaning her pain is okay, Sheba holds her gaze on happiness, especially being with her friends and family. Meeting new people brings her joy, too.

“I want to see the world. There’s so much to do. My dream for 2022 is to stay out of the hospital and travel more. The ocean is my peaceful place. I want to be on the beach somewhere!”

To learn more about sickle cell disease, click here. To find a donation appointment, click here.

Story by Lynette Nyman/American Red Cross. Photos provided by Sheba Benson

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