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It started with a backache after 14-year-old Mikayla Draughon got home from school earlier this fall.
She thought the pain was from her heavy book bag, so she took ibuprofen and considered everything fine. Then the pain grew worse and started moving. First, it was in her ribs, then in her upper abdomen.
“It felt like somebody was stabbing me in my stomach,” said Draughon, a highschooler who recalled the experience with a maturity beyond her years.
Draughon was experiencing pain related to a condition she was born with: sickle cell disease. A cluster of sickle cells, or abnormally shaped blood cells, had gathered together and was moving around her body.
While two weeks of treatment at the hospital saved Draughon’s life, she needs a long-term solution. Draughon has been waiting for two-and-a-half years to find a match for a bone marrow transplant, which could potentially cure her disease.
Draughon is in a familiar position for many Black patients seeking bone marrow and blood stem cell transplants. Nationwide, Black patients listed on the national registry for the procedures have a 29 percent chance of finding a match, according to Be The Match, which runs the registry. White patients are three times as likely to find a match at 79 percent.
It isn’t just Black patients who have a tougher time than white patients finding a match. Asian patients have a 47 percent chance of finding a match. Latino patients have a 48 percent chance.
Race is a key factor in finding a match for bone marrow transplants, and Be The Match recently launched a new campaign to attract more donors of color. People of the same race are more likely to have similar human leukocyte antigen markers, proteins located in blood cells that must match for a successful transplant.
“Patients who need a transplant have often exhausted all other options for treatment, and a transplant is a critical life-saving procedure,” said Erica Jensen, senior vice president of member engagement, enrollment and experience at Be The Match. “The more diverse donors we can add to the registry, the more lives we can save.”
A week in intensive care
After the pain reached Draughon’s lungs earlier this fall, her oxygen levels plummeted. She was hospitalized for two weeks, including one week in the intensive care unit. She underwent three blood transfusions and one blood exchange transfusion to bring her back to her normal self.
Draughon was shopping at the Mall of America with her cousin one day after being discharged from the hospital. But that doesn’t take away from the seriousness of her hospital stay. At one point, Draughon’s oxygen levels fell to 30 percent; medical intervention is needed when they’re as low as 90 percent. Doctors put her on a ventilator for four days.
“I was so numb,” said Draughon’s mother, Demitrea Kelley. “I almost fainted the day we had to do the exchange. I just wasn’t myself. I didn’t eat much for days. I didn’t sleep. It’s just really scary. You’re anxious, you’re worried, you’re just concerned. But you also have to make really important decisions in this emotional state.”
Despite her lifelong battle with sickle cell disease, Draughon showed no signs of defeat or self-pity in a recent interview with Sahan Journal at her home in downtown Minneapolis. The upbeat freshman at Edina High School spoke casually about her recent hospital visit, recalling that she didn’t remember much because she was in a medically induced coma for most of the stay.
Draughon said she often lost track of time as she drifted in and out of sleep.
“I only thought it had been a couple of hours, but my mom said it had been two days,” Draughon recalled, smiling.
In her free time, Draughon likes to play volleyball, basketball, and visit the Mall of America with friends. She grew up in Indianapolis, Indiana, and moved with her mother to Minneapolis in 2020.
Draughon said she still prefers Indianapolis—”I’m used to Indiana, and all my friends are there,”—but has been slowly adjusting to life in her mother’s hometown.
500 donors of color needed
Be The Match is teaming up with Blue Cross and Blue Shield of Minnesota to help patients of color like Draughon who are facing life-and-death circumstances. The organizations are trying to boost the number of volunteers of color on the registry in the Twin Cities.
Be The Match received a $100,000 grant from Blue Cross Blue Shield to enroll 500 volunteers from diverse backgrounds in the registry.
Bukata Hayes, Blue Cross Blue Shield’s vice president of racial equity, said the campaign has currently added 288 “ethnically diverse” donors to the registry. The campaign has executed outreach efforts at events like the Minnesota State Fair and the Juneteenth celebration in north Minneapolis, which celebrates the emancipation of enslaved people in the United States.
“We thought, ‘How can we partner to bring greater visibility in terms of the gap between white Minnesotans and Black Minnesotans?’” Hayes said of the campaign. “‘How do we go to the community?’ You have to build trust and speak to what this is really about. And you have to be present, too.”
Volunteers on the registry must provide a cheek swab of their saliva. If a bone marrow donor matches with a patient and decides to move forward with a donation, their bone marrow is extracted from the back of their pelvic bone with a needle while they are under anesthesia.
Cortney Alleyne underwent the procedure in 2019 when she donated her bone marrow to her sister, who was born with sickle cell disease.
The bone marrow extraction process took three hours, said Alleyne, a Tampa, Florida, resident who works for Be the Match as a sickle cell patient navigator. She left the hospital in a wheelchair that same day and took a day of bed rest to recover.
“I was in a good amount of pain,” she said, adding that she was back to normal within a few days.
The recovery time is why Be the Match seeks out donors between ages 18 and 40, and prefers donors ages 35 or younger.
Patients receive a bone marrow transplant through an IV infusion. But they often undergo a couple of weeks of chemotherapy first to kill the abnormal bone marrow stem cells and bad blood cells already in their bodies.
Should Draughon eventually find a match and pursue a bone marrow transplant, she would likely need to take a full year off from school because doctors would need to closely monitor her immune system following the procedure.
She would likely need to spend three months in the hospital on bed rest to build up her immune system, and limit her physical activity afterwards. Her after care would also include weekly outpatient visits.
If Draughon can’t find a match on the registry, she has another option—her mother.
Kelley, who is 34, is a 50 percent match for her daughter and is strongly considering donating her bone marrow. Ideally, Draughon would find a 90 to 100 percent match, which increases her chances of being cured of sickle cell disease. But that doesn’t look likely at the moment.
Kelley and Draughon are waiting until early next year before deciding whether to use Kelley or another match as a donor. They’re looking forward to the day Draughon doesn’t have to take so many precautions in her day-to-day life, like limiting her sports activity and her time outside during the winter, which can aggravate her condition.
Kelley would love to take her daughter on one of her mission trips to Africa, something that’s been impossible to date. She doesn’t want to rush a decision about donating to her daughter, but after this fall’s scare, she also knows that they can’t just keep waiting.
“We don’t want to wait longer and have what just happened happen again,” Kelley said.
How to become a donor:
If you’re interested in adding yourself to the registry to donate either bone marrow or blood stem cells, apply online at Be The Match’s website.
You must be between the ages of 18 and 40. The application asks for your medical history, which Be The Match will review in deciding whether you can stay on the registry.
If Be The Match determines that you can stay on the registry, the organization will send you a swab kit. Use the kit to send a saliva sample back through the mail. Be The Match will use the sample to match you with a patient.
You will be contacted if you are a match, which may never happen. If you’re a match for a blood stem cell transplant, the donation process is similar to donating blood or blood plasma. If you’re a match for a bone marrow transplant, the donation process will include anesthesia and likely require a couple days of recovery.