Blood Diseases

It’s On You to Help Save Lives

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July is African American Bone Marrow Awareness Month

 

For 16-year-old Nivia Charles of Oakland, Calif., the future is uncertain – but not because she doesn’t know what she wants to be when she grows up. The aspiring hematologist oncologist has sickle cell anemia, an inherited blood disorder that is often life-threatening.

 

Nivia showed signs of the disorder on her first birthday. She and her mother spent the night in a local hospital where doctors tried to manage a debilitating pain crisis. Over the years, she’s had countless episodes of writhing pain. Though therapies and medications help mitigate the symptoms, Nivia’s best hope for a cure and a future free from pain, is a bone marrow transplant. But like many African Americans in need of transplants, Nivia doesn’t have a matched donor.  

 

Patients in need of an unrelated transplant typically find a suitable donor in someone with a similar racial and ethnic heritage. But, for Nivia and other African Americans, there is a dire need for diversity on the Be The Match Registry, the world’s largest registry of potential bone marrow donors.

 

“When I learned that a bone marrow transplant would be the best option for my daughter’s survival, I thought surgery would be the hardest part,” said Dionne Dixon, Nivia’s mother. “But finding a matched donor has been the difficult part so far. People don’t understand the importance of bone marrow donation and those who’ve heard about it automatically think it’s painful or dangerous. That’s not true.”  

 

Be The Matchis raising awareness about the critical need for more African American bone marrow donors this July, which is African American Bone Marrow Awareness Month. Be The Match connects patients with their donor match for a life-saving bone marrow or umbilical cord blood transplant.

 

Throughout July, donor registry events nationwide will give African Americans the chance to join the Be The Match Registry. A special online promo code, “AABMAM,” also can be used to join the registry online anytime during the month. And adedicated landing page (www.BTMItsOnYou.org) will share the facts about what bone marrow donation is really all about – confronting common myths that it’s painful or costly – along with inspiring stories of real people who have donated.

 

The realities of donation

 

“It only takes a few minutes to join the Be The Match Registry, and if one day you’re asked to donate, you could be the only one out of millions who can save a person’s life,” explains Kimberly Washington, a 22-year-old college student at the University of Tennessee at Chattanooga (UTC). Washington donated to a woman with leukemia in 2009. “The possibility of saving someone’s life made the process so special for me. I would donate again in a heartbeat.”

 

Washington donated peripheral blood stem cells (PBSC), a process similar to donating platelets or plasma. Physicians request this donation method about 75 percent of the time. Less frequently, doctors request a traditional marrow donation, which is a surgical, outpatient procedure that takes place at a hospital. General or regional anesthesia is always used.

 

The need

 

Knowing that 12,000 people are diagnosed with life-threatening diseases each year and need an unrelated bone marrow transplant to survive, Nivia is working within her community to raise awareness about donation. She hosts donor registry drives to recruit potential donors and hopes her efforts will save someone else’s life.

 

The odds of finding a matching donor vary. For white patients, the likelihood of finding a matching donor who is willing and available to save a life is about 93 percent. However, for African American patients, the odds are about 66 percent. More African Americans are needed to join the registry in order to save more lives.

 

Since 2004, the number of transplants among African Americans facilitated by Be The Match has doubled, but African American patients still have the lowest odds of finding a match compared to all other populations – and the most diverse tissue types, which makes the matching process even more challenging.

 

“Be The Match has made incredible strides toward increasing the diversity of potential donors on the registry,” said Jeffrey W. Chell, M.D., chief executive officer of Be The Match. “But more African American registry members are needed now. It’s on you. Join the Be The Match Registry and spread the word. You can help us save more lives.”

 

To learn more about how you can get involved and to join the registry, visitwww.BTMItsOnYou.org.Talk to members of your community about the importance of donation. For a fun way to get involved, considered participating in the Be The Match Walk+Run, a series of 5K events that raise funds to help Be The Match Foundation add donors to the registry, conduct life-saving research and provide financial assistance to patient families. 

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