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

Fall 2021 Sickle Cell Initiative Blood Drive

Our profound thanks to everyone who supported our Sickle Cell Initiative blood drive on September 25 at Fellowship Missionary Baptist Church in North Minneapolis. We had a great turn out – collected 51 units! Many thanks to Sickle Cell Initiative local partners and sponsors, including HealthPartners, Sickle Cell Foundation of Minnesota, Black Nurses Rock Twin Cities Chapter, Fellowship Missionary Baptist Church, Epsilon Rho Chapter of the Omega Psi Phi Fraternity, Delta Sigma Theta Sorority, and KMOJ. A diverse blood supply every day helps sickle cell patients in crisis. Learn more.

One of two Red Cross buses, including the regional fleet’s newest, supported the blood drive. In total, 55 people, including 17 new donors, presented to donate. 51 units were collected on the two buses.
Precious, a new Red Cross volunteer and a recent college graduate, checked in donors as they arrived throughout the day at Fellowship Missionary Baptist Church in North Minneapolis.
Twin Cities Red Cross board chair, Dr. David Hamlar, helped plan the drive and donated blood. “There’s more work to do,” he says. We’re grateful for his ongoing support for this long-term initiative.
Epsilon Rho Chapter of the Omega Psi Phi Fraternity helped organize the blood drive and encouraged people, especially first-time donors, to roll up a sleeve for sickle cell and other patients in need of blood transfusion.
Community partners like Rae (l) with the Sickle Cell Foundation of Minnesota and Beverly (r), a Red Cross volunteer who’s also with Fellowship Missionary Baptist Church, are critical for blood drive success.

Infographic – Blood Donors and Diversity

People come in all different shapes, sizes and blood types. Most blood types fall into one of the four major groups: A, B, AB, O. However, some people have rare blood types that fall outside the major groups, and for these patients, we need a more diverse blood supply.

For example, blood donors who are Black play a critical role to help ensure patients with sickle cell disease have continued access to the treatments they need. You can make a difference in the life of someone with sickle cell disease.

Black donors are more likely to be deferred due to low hemoglobin. This deferral is temporary and is to help protect the health of both the donor and the recipient. To help avoid a blood donation deferral due to low hemoglobin, the Red Cross recommends that individuals who have low iron levels begin preparing for their blood donations six to eight weeks prior to their appointment. This is because it can take several weeks for the body to absorb iron. We encourage anyone interested in donating blood to consult with their healthcare provider about taking multivitamins with 18 mg of iron. In addition, eating a nutritious, well-balanced diet with foods rich in iron and in vitamin C helps to maintain healthy iron levels.

Make your appointment.

Critical need for African American blood donors

Hi Everyone,

We want to let you know that the American Red Cross has a critical need for African American blood donors to help patients, especially those battling sickle cell disease, following a significant decrease in diverse donors in the midst of this COVID-19 pandemic environment.

Across the nation since mid-March, the number of African Americans donating blood with the Red Cross has dropped by more than half. This low donor turnout is largely due to blood drive cancellations at businesses, churches and schools and the disproportionate COVID-19 infection rates for African Americans compared to other ethnicities.

Despite the steep decline in blood donations, the need for blood products for patients with sickle cell disease has remained relatively steady.

So, we’re reaching out to partners, community influencers, organizations, and YOU! for support that could help raise awareness about the need for diverse blood donors, especially African American blood donors during this COVID-19 pandemic.

In addition, we’re encouraging eligible donors from communities of color to keep their scheduled donation appointments and to look for open appointments at redcrossblood.org, especially in the weeks ahead as blood drives are added.

Thank you! 😘

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