While the Be The Match Registry, operated by the National Marrow Donor Program (NMDP), has approximately 9 million potential donors, only 7% are African American. It’s this startling disparity that leaves African Americans in need of a marrow donor, such as 11-year-old Imani Cornelius, in an adverse limbo. The vivacious pre-teen discovered she had myelodysplastic syndrome (MDS), a disease of the bone marrow and blood, nearly two years ago.
“I kind of felt confused and sad,” says Cornelius, who’s also bi-racial and part Caucasian—further lowering her chances of finding a donor match. Her parents—Tammy Berndt and Darrick Cornelius—were devastated by the diagnosis, but sprung into action, attempting to learn more about the disease and ways to keep their only daughter healthy. Although Imani’s disease is mild at the moment and she remains active in dance and outdoor activities, she’s still in need of a donor. The young, Shakopee, Minnesota-native was set to receive a transplant from a perfect match, but before the big day the donor pulled out. “It’s forced us to see we need to work with Be The Match because we didn’t even know about Be The Match until we lost our donor,” says Berndt. “Then, when Be The Match came into our lives, we realized that people just don’t know about it [bone marrow donations] and that’s where we started the education.” The three have conducted several fundraisers on behalf of the organization and conducted workshops throughout their community at local churches, colleges and events.
Education is key in shattering the myths and misinformation circulating in communities of color about joining the registry, and the bone marrow and peripheral blood stem cell (PBSC) donation processes. Both of which serve as treatment for people with leukemia, lymphoma and several other diseases. “We’re not taking something from you that cannot be replaced, however, it’s really and truly the fear factor,” says Nadya Dutchin, a Be The Match spokesperson. “People are afraid to number one: do something and over commit themselves. They think they’re over committing themselves not realizing what a precious gift it is they would be offering to somebody. They hear bone marrow drive and they think we’re literally doing [surgical] procedures at the drive. It’s nothing like that.”
Dutchin outlines how YOU can get involved and essentially save a life:
Join the registry
After making sure you meet the simple registry guidelines—anyone between the ages of 18 and 60 and in good health can be a donor—complete the online form and order your registration kit, which is at no-cost to you. You can also opt to find a donor registry drive or contact a recruitment center near you. The kit comes with swabs and it’s as simple as swabbing the inside of your cheek for cells and sending the sample back for analysis. The NMDP will tissue type the sample you provide and use the results to match you to patients.
If you’re a match…
Marrow donation can happen in one of two ways:
Peripheral Blood Stem Cell (PBSC) donation
Seventy-five percent of donors use this non- surgical procedure. It’s designed to draw blood from one arm, the cells needed for the transplant are extracted, then the rest of the blood is returned to the other arm. The procedure can take up to five hours.
Surgical marrow donation
This technique is requested about 25% of the time. A needle is inserted through the back of the hip into bone and the spongy marrow is removed. Donors generally feel soreness in the lower back or experience flu-like symptoms afterward, but most feel better and return to their regular business within 7-10 days.
During African American Bone Marrow Donor Awareness Month and beyond, Dutchin urges Blacks to get involved because one never knows when they may find themselves, or a loved one, in need of a transplant.
For more information, call 1 (800) MARROW2.