In May, Denise Bertholin got married. She wore a white dress and carried beautiful lilies. She and her groom, Matt Braun, said “I do” in front of family and friends.
But instead of getting hitched in the mountains of Harpers Ferry, West Virginia, as she’d planned, Bertholin took her vows in a hospital chapel at Johns Hopkins Medical Center in Baltimore, Maryland. That’s because three weeks before her wedding, she learned she had a rare form of acute leukemia.
As early as February, Bertholin noticed she wasn’t feeling like her usual self: She was run down, very tired. She thought it had to do with her job and preparing for her “big day.” Then one day toward the end of April, Bertholin could barely make the walk from the parking lot to a drugstore. For all of her 29 years, Bertholin had been thin and in good shape; on this day she knew something was very wrong.
At first, her oncologists tried aggressive chemotherapy. Although the treatment helped, they knew her form of leukemia had a tendency to return. Her lead doctor suggested she have a bone marrow transplant, saying it was the best way to attack the cancer.
A bone marrow transplant is one of the best ways to fight acute leukemia, say experts. Bone marrow is the spongy substance found inside large bones. It produces stem cells that turn into new red and white blood cells, and platelets. Allogeneic means the transplanted bone marrow comes from a matched donor–preferably a family member.
In Bertholin’s case, no one in her family was a perfect match. Her next step was to join a national bone marrow registry called Be The Match Registry.
But she faced an obstacle: Bertholin is Latina. According to Dr. Jeffrey Chell, the chief executive officer of the National Marrow Donor Program which runs Be The Match, only 9 percent of people on the registry are Hispanic. “That’s not enough,” says Chell.
Each year, thousands of people with different forms of cancer turn to the National Bone Marrow Registry for transplants. Seven million people are listed on the registry, but a very small percentage of them are from minority groups. That’s unfortunate, says Chell, because “your background, your heritage is absolutely critical in finding a match.”
According to Chell, joining the registry is easy: It involves taking a simple swab of the inside of your cheek to determine your tissue type and mailing it off. (You can also register in person.) Your name then goes on the list. If you’re called to donate, and are deemed healthy enough, bone marrow is extracted–or harvested–usually from the hip.