Shagah Zakerion is on her fourth bout with cancer. For her, blood is life. And, in the last few weeks, she’s had to miss at least two transfusions because there is just not enough blood in Tulsa to go around.
Her younger sister, Sheyda Brown, engaged her community organization skills to launch the “Team Shagah: 100 New Donors” campaign. During her recent first donation, she noticed most donors in the room were white, male and older.
Demographics matter. Certain ethnic groups have unique antigens making treatment for some patients with similar ancestry — such as those with sickle cell or blood cancers — more successful. This was the case when Zakerion was a teenager searching for a bone marrow donor through the national blood supply database.
“There are a lot of misconceptions around who benefits from blood donations,” Zakerion said. “It’s people like me who are reliant on them for survival through cancer treatment and stem cell or bone marrow transplants, pregnant women going through labor or someone having a routine surgery and ends up needing blood or platelets.”
Brown’s observations about who donates blood are pretty accurate. The national American Red Cross donor statistics show 85% are white, half are older than 55 and slightly more than half are men. The Oklahoma City-based Our Blood Institute is similar in race and gender with 77% white and 54% male, but has more even splits among generations — 1% Silent Generation, 19% baby boomers, 27% Gen X, 26% millennials and 27% Gen Z.
Thus, Team Shagah, which doesn’t target any specific group, hopes to add diversity to the donor pool by adding more people.
“I’m coming at this from being a new donor as well,” Brown said. “I watched Shagah struggle when blood and platelet transfusions were delayed, and I wouldn’t have known about the shortage. I consider myself a community-minded person, and this wasn’t something I learned much about or participated in.”
Zakerion was diagnosed at age 18 with myelodysplastic syndrome, which is a group of diseases preventing healthy blood cells from developing in bone marrow. She’s gone through three bone marrow transplants since then, and more than 200 blood transfusions in her life.
For her first transplant, St. Jude Hospital doctors relied on the national blood database to find a bone marrow match. The lack of donor diversity made that difficult, and family donors were not as successful then.
The match process works like a zipper, with each groove of HLA typing needing to match. Finding that perfect other half depends on similar race and ethnic background. The family immigrated from Iran when Zakerion was an infant. After months of searching, they found a donor.
Zakerion’s transplant put her cancer in remission for a decade. It came back in 2016 and 2019, and M.D. Anderson in Houston provided treatment. By then, family donors had a higher non-rejection rate. Her mother, Pary, and Brown provided the bone marrow for those transplants.
“One of the first things doctors said was that with a disease like mine, the goal is to keep me alive long enough to get from one advancement to the next,” Zakerion said. “I have really lived that out. I have been a part of the medical advancements and treatments of this disease. I’m in a trial one year and the next it’s a standard practice.”
With each recurrence, blood transfusions are critical in the treatment of blood cancer with chemotherapy and other drugs.
In January, severe blood and platelet shortages were issued by the American Red Cross and Our Blood Institute. OBI lifted its emergency status but continues to seek Type O blood and platelet donors.
“Our goal for Team Shagah is for people to see value in donation and work that into their lives as ongoing donors,” Brown said. “But I am wondering about the discrepancies. It would be useful to find out why people who donate a lot do so.”
The answer from Sand Springs resident David D. Smith is rooted in his family upbringing. He is set to make his 500th platelet donation in addition to regularly giving whole blood at the American Red Cross.
Growing up, he watched his father regularly give blood and earned his Eagle Scout rank by starting a blood drive. His Type O-negative blood is highly sought because it can be accepted by anyone. As an Oral Roberts University student in the late 1970s, the American Red Cross once sought him at midnight to get a blood donation for an infant in crisis.
“It was definitely a memorable, unique and pivotal moment in my life,” Smith said.
Smith is among the 3% of Americans who donate blood. He chose to give platelets after finding out how many cancer patients need them. He gets notifications about what states and institutions have used his donations.
“It was the way I was raised — to look for opportunities to help others,” Smith said. “I’m always posting photos and trying to get people to donate. It’s something I’m constantly doing.”
For the Team Shagah initiative, Brown created an online tool kit with a Q&A about the donation process, link to schedule a donation and a form to show support for her sister. The goal of 100 donors has reached about 10 as of Feb. 27.
“At a time when it feels hard to make a difference, this is a really human way to give. You are giving something to help someone live, and you don’t know who will receive it,” Brown said. “It shifted everything for me. It’s going to be a priority forever.”
Zakerion has outlived the odds, living with a disease for 21 years that have an average lifespan of 11 years. To continue that progress, blood donations are necessary.
“When told I had to skip a transfusion, that radicalized us into getting the message out about blood donation,” she said. “It’s not just because I need them. It’s because we are at a critical shortage that is impacting my ability — and that of others — to stay alive.”
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