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. 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," she said.
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 her life, she needs a long-term solution. She has been waiting for 2½ 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% 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% .
It isn't just Black patients who have a tougher time than white patients finding a match. Asian patients have a 47% chance of finding a match. Latino patients have a 48% chance.
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 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 lifesaving 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."
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.
"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."
Despite her lifelong battle with sickle cell disease, Draughon showed no signs of defeat or self-pity in a recent interview . The upbeat freshman at Edina High School said , she didn't remember much about her recent hospital visit because she was in a medically induced coma for most of the stay.
"I only thought it had been a couple of hours, but my mom said it had been two days," Draughon recalled, smiling.
Be the Match is teaming up with Blue Cross and Blue Shield of Minnesota to help patients of color such as Draughon. The organizations are trying to boost the number of volunteers of color on the registry in the Twin Cities area.
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.
Volunteers 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, of Tampa, Fla., underwent the procedure in 2019 when she donated her bone marrow to her sister, who was born with sickle cell disease.
"I was in a good amount of pain," said Alleyne, who works for Be the Match as a sickle cell patient navigator. She added 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.
If Draughon can't find a match on the registry, she has another option — her mother.
Kelley, 34, is a 50% match for her daughter and is strongly considering donating her bone marrow. Ideally, Draughon would find a 90 to 100% match, which increases her chances of being cured of sickle cell disease.
Kelley and Draughon are waiting until early next year before deciding whether to use Kelley or another match as a donor.
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.
This story comes to you from Sahan Journal, a nonprofit newsroom dedicated to covering Minnesota's immigrants and communities of color. Sign up for its free newsletter to receive stories in your inbox.
