27 And In Need Of A Bone Marrow Transplant: You Could Be The Cure
The first time that I had ever heard of Be The Match was years ago when Good Morning America co-host Robin Roberts announced her cancer diagnosis.
In the campaign that acted as a 30-second television spot, Roberts said, “I have a chance to survive blood cancer because my big sister answered 'yes' to being my marrow donor. You can join the Be The Match Registry today at BeTheMatch.org, and stand ready to cure someone with a disease like leukemia."
It was a powerful call-to-action that made me feel some type of way about resting on my laurels as opposed to doing what I can for those in need. The potential to be someone's cure really spoke to me. I found myself signing up to register as a donor in the registry shortly after.
But I stopped myself from continuing with the process after receiving some input from my mother who felt that it was a painful process and just something that black people just “don't do". That phrase is something that stops us in our tracks as a community a lot, sometimes to our detriment – that day five years ago was no different.
The Urgent Need for Diversity in Bone Marrow Donors
My encounters with Be The Match came full circle for me the other day when I received an email from a representative who felt like Black History Month would be the perfect time to relay a message to our readers that was a simple, clear, yet resounding, “We need you." Even though Roberts' campaign led to over 40,000 new donors signing up, there is still an undeniable void amongst one group of people in the registry: black people.
Patients are most likely to match a donor that closely shares their ancestry. Black people have historically had the lowest odds of finding a match compared to other populations in the registry. Why? Because…
- Black people have the most diverse genetic tissue types compared to other ethnicities.
- Not enough black people volunteer as bone marrow donors in the registry.
Currently, we only make up 6% of the registry, which is a far cry from the 51% that account for white people in the registry. As the global leader of umbilical cord blood transplants and bone marrow transplants, Be The Match is often the only hope for patients looking to find a cure for blood-related cancers like leukemia and lymphoma, as well as sickle cell anemia, and other anemic/blood disorders. It should be noted that bone marrow is so far the only cure out there for sickle cell anemia.
Since we just make up 6% of donors in the registry, bone marrow transplants that are a match can be hard for many patients to find. And, without access to qualifying donors, a cure is less likely for recipients to find. You would think that if you have siblings, you'd be covered, like in Roberts case where her sister was a match for her and her cancer was cured.
But Roberts is the exception, not the rule. In fact, 70% of patients do not have a fully matched marrow donor in their family, which is why Be The Match is so pivotal to offering a cure to those in dire need of finding a viable marrow transplant, like Shaunise Robinson for example.
The Importance of Be The Match
Shaunise Robinson at an Aplastic Anemia Awareness drive
Shaunise Robinson is a 27-year-old third grade teacher who believes her life purpose is to help children through education. The mother of one (a son who turned 4 this month) is a doctoral-degree candidate at Texas A&M. But this past fall, a fulfilled life took an unexpected turn when in November 2016, Shaunise was officially diagnosed with aplastic anemia, a really rare blood disorder that causes all of her blood counts to be severely low, causing severe fatigue, shortness of breath, a very weak immune system, and profuse bleeding (because blood cannot clot).
Eventually, her bone marrow may not be able to make enough new blood cells, which can lead to many more health problems, including an enlarged heart, irregular heartbeats, heart failure, infections, bleeding, and even death.
Regarding the disorder, Shaunise says:
“They don't know how this happened, they don't know where it came from. In most cases, you'll never really find out how you got it, it just happens. It doesn't run in your family. It has nothing to do with that."
She remembers being in the middle of teaching a class when she got the call that confirmed all her concerns about her health. Earlier in that week, she had gone to her OBGYN and explained an issue she had been having with profuse bleeding. After years of feeling like something was off with her body, but being told again and again that everything was fine, her OBGYN went above and beyond by taking her blood count to find the root of her problems. Tests were ran and her blood counts were revealed to be severely low. She had to rush to the hospital immediately. Doctors believed it was some form of cancer, but after extracting a bone marrow biopsy from her back, they found the real culprit to her health issues: aplastic anemia.
After being connected to a larger hospital, Shaunise was also given the information and connected with Be The Match. She started hosting drives to find a donor and began her journey of raising awareness for the organization and giving a voice to the voiceless, because oftentimes, patients with blood-related illnesses and diseases are young children who can't speak up for themselves.
Shaunise has no donor, can't teach her students (due to potential illnesses she could catch) who miss her as much as she misses them, but she still manages to have an incredible and giving spirit in the midst of her hardship. During my brief call with her, I noticed that her light was undeniable and absolutely radiated, even during a time where most would be overcome by darkness. “I have a lot of faith that I'm going to find a donor and that everything's going to be fine. I feel like I have a purpose and a lot of things I still have to accomplish in life. So, I really don't think negatively about it. I think about it like everything happens for a reason. I'm able to tell people about it that maybe would never have known about it and they're able to join the registry and help someone else. I always think about it that way and that everything happens for a reason and that God's purpose was for me to have this. I don't know the exact reason why, but I know there's a reason why this happened to me."
"I want to make the best of it. I want to raise awareness so that me going through this isn't in vain."
What the Bone Marrow Donation Process Is Really Like
Aside from not knowing about Be The Match, I realized a common theme that stops people from signing up is the fear of the process. People hear the words “extraction", hear about the long needle, hesitance goes into overdrive, and they aren't willing to donate bone marrow at all. I don't blame them, I too fell victim to believing the hype that the procedure was far too painful to endure and thus wiped my hands of the possibility of it. However, former Villanova University defensive back CJ Logan sang a different tune for me.
The now 23-year-old New York-based financial advisor was on the Villanova University football team back in the spring of 2013 when he signed up for the registry. At the time, he was on a football team led by Coach Talley, who believed in giving back to the community in any way that they could and who had a close personal connection to the message of the Be The Match foundation.
After submitting a cheek swab for the registry, CJ wouldn't get a call about a bone marrow donation until two years later in the fall of 2015, during his senior year. He got a follow-up email detailing that he and two other people could potentially be a match for a patient in need of a transplant. He went to a nearby hospital where they drew some extra blood. “About a week or so later, they told me, 'Hey, you're the definite match. Are you interested in doing it? Can you come in?' I was like, 'Absolutely'," he says with a smile in his voice, “As far as I was concerned, if it was my mom or my sister in that position – because I was donating to a 33-year-old international woman – I definitely wish that someone who had the opportunity to make a difference would step up and do it."
CJ Logan after his donation to a bone marrow transplant recipient
The morning of December 15, 2015, CJ went in for surgery to begin the bone marrow donation procedure. “I came in early - 5:30, 6 am. I gave some more blood. I talked to the nurses. I met the surgeon who was going to do the operation. I relaxed. Like an hour and a half later, I remember them talking to me and (after that) I just (remember that I) woke up. It was because of the anesthesia," he laughs. “It was very quick. Afterwards, I stayed in the hospital just because. The following morning, Coach Talley had one of the assistant coaches pick me up from the hospital."
Despite the intimidating length of the needle, CJ said he felt no pain at all during his procedure because of the drugs he was given. In fact, the only pain he felt was more like a soreness in his back for the first couple of weeks post-surgery and said the discomfort was comparable to losing a game to Delaware and the “battle wounds" that'd include. “It was a little stiff. But with that being said, I didn't think it was too discouraging. If anybody were to get a call saying they were a match, I would 100% encourage them to do it."
"I never thought that as an individual that I could make that big of an impact on someone else's life."
It being all about the bigger picture was a recurring theme in both conversations I had with Shaunise and CJ, just told through different perspectives. Although he didn't know much about the woman who recieved the life-changing donation, he felt blessed to be able to change and extend someone's life and that was louder than any fear. "It's a blessing. If there were any doubts about me making it to heaven prior to that surgery, I hope that secured it," CJ shares with a laugh, "But no, honestly, it was a remarkable experience, because I never thought as a single person, as an individual, that I could make that big of an impact on someone else's life. So that's definitely something that I carry with me."
The Bottom Line
In response to anyone who still might have reservations about joining the registry, Shaunise states, "One of the biggest things right now is the registry isn't that diverse. I'm an African-American. You have to find a donor that represents your DNA. My best match is going to be someone who shares my ancestry, an African-American. The problem is, African-Americans represent 6% of the registry. Hispanics represent 10%. Asians represent 6%, so if you are of a diverse background, we're not really represented in the registry. This could happen to anybody. I'm 27 years old. I was healthy. I was active my whole life. This happens to anyone, little kids. I met this two-year-old girl. I can't imagine being a child going through this. For people who are hesitant, we have to think beyond that. We need to help each other."
Shaunise Robinson's story was exactly the thing that I needed to remember how much good could happen from the smallest thing. Registering is simple and to the point, the donation process is straightforward and includes anesthesia, and the end result is saving someone's life who might otherwise not have a solution to what's slowly killing them or making them ill. I was reminded of the power of community and again the ripple effect that comes with doing the right thing. Not to mention the good karma.
"If you are of a diverse background, we're not really represented in the registry. This could be anybody."
I think as black people we need to make ourselves present in all spaces, especially spaces where there is a demand for diversity. It's great that we're on more television shows, that we can shout FUBU anthems from the mountain tops, and that we can shop black, but we also need to make sure that we show our faces in these places and uplift our community health-wise as well. Shaunise and CJ are right, it could be any of us.
I hope to someday be the match for someone in need. Until then, I am an active member of the registry, on-call to be a donor at any time for anyone. At least, until I'm 65.
So, will you join the registry?
Visit Be The Match today and find out ways how to be of service to people fighting blood-related illnesses and diseases and how to support the cause by joining the bone marrow registry.
ItGirl 100 Honors Black Women Who Create Culture & Put On For Their Cities
As they say, create the change you want to see in this world, besties. That’s why xoNecole linked up with Hyundai for the inaugural ItGirl 100 List, a celebration of 100 Genzennial women who aren’t afraid to pull up their own seats to the table. Across regions and industries, these women embody the essence of discovering self-value through purpose, honey! They're fierce, they’re ultra-creative, and we know they make their cities proud.
VIEW THE FULL ITGIRL 100 LIST HERE.
Don’t forget to also check out the ItGirl Directory, featuring 50 Black-woman-owned marketing and branding agencies, photographers and videographers, publicists, and more.
THE ITGIRL MEMO
I. An ItGirl puts on for her city and masters her self-worth through purpose.
II. An ItGirl celebrates all the things that make her unique.
III. An ItGirl empowers others to become the best versions of themselves.
IV. An ItGirl leads by example, inspiring others through her actions and integrity.
V. An ItGirl paves the way for authenticity and diversity in all aspects of life.
VI. An ItGirl uses the power of her voice to advocate for positive change in the world.
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ItGirl 100: Get To Know Some Of The Most Inspiring And Empowering Women On Our List
The ItGirl 100 List, in partnership with Hyundai, is a celebration of 100 Black women who aren’t afraid to pull up their own seats to the table.
We often see lists featuring amazing women who are seasoned in this thing called life, and our ItGirl 100 List gives flowers to the people they’ve passed the torch to: young millennial and Gen Z women who are innovating and disrupting in today’s world of advancement.
xoNecole has partnered with Hyundai for its inaugural ItGirl 100 List to give these women their flowers today. It’s a celebration of 100 Genzennial women who have built their own tables, launched new businesses, and redefined what it truly means to be blessed, booked, and busy.
Here’s a snapshot of fun facts from a few of the women listed on the ItGirl 100, representing the East, West, Midwest, and South:
EAST
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DJ 9AM: DJ & Curator
Representing: Brooklyn
Ultimate ItGirl Song: "On My Mama" by Victoria Monét
Favorite OG It Girl: Nia Long
Zodiac Big Three: Cancer Sun, Taurus Moon, Pisces Rising
Favoring open-format, multi-genre mixes, this DJ has created a winning reputation for rocking a crowd with seamless transitions and selections, always representing Southwest musical and cultural influences.
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Tiffany James, Founder, Modern BLK Girl
Representing:Brooklyn
Ultimate ItGirl Song: "Lucky Girl" by Carlina
Favorite OG It Girl:Naomi Campbell
Zodiac Big Three: Sagittarius Sun, Leo Moon, Virgo Rising
Modern BLK Girl is one of the leading investment groups among women of color, and the founder serves as an avid investor, community builder, and advocate. Tiffany James is also a mentor, utilizing her unique combination of financial and fashion expertise.
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Kat Mateo, Casting Director
Representing: New Jersey
Ultimate ItGirl Song: "Princess Going Digital" by Amaarae
Favorite OG It Girl: Kelis, Eve, Lil Kim
Zodiac Big Three: Aries Sun, Cancer Moon, Cancer Rising
Thriving as a casting director and stylist, Kat Mateo offers a unique point of view that has shaped New York Fashion Week shows, ad campaigns, and editorials. She has also been a major contributor to cultural conversations related to fashion and inclusivity.
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Denise Stephanie Hewitt, Photographer
Representing: Brooklyn
Ultimate ItGirl Song: "Experience" by Victoria Monét
Favorite OG It Girl: Hannah Montana
Zodiac Big Three: Taurus Sun, Aquarius Moon, Aquarius Rising
This Gordon Parks Foundation scholar is a full-time student who has been working to expand her freelance career in photography. Denise is also been featured among Essence'sinaugural list of "Top 10 Creators Under 30," for her unique aesthetics and perceptions through her art.
WEST
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Nayamka Roberts-Smith, Aesthetician
Representing: Los Angeles
Ultimate ItGirl Song: "Tomorrow 2" by GloRilla & Cardi B
Favorite OG It Girl: Meagan Good
Zodiac Big Three: Sagittarius Sun, Leo Moon, Capricorn Rising
Nayamka Roberts-Smith is an award-winning professional in the skincare industry and serves as an educator, offering knowledge on beauty culture. She also is a well-sought-after speaker on beauty and women’s issues, with a following of more than 1 million on social.
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Desiree L. Talley, Esq., Vice President, Legal & Business Affairs, Revolt TV
Representing: Los Angeles
Ultimate ItGirl Song: "Nice" by The Carters
Favorite OG It Girl: Issa Rae
Zodiac Big Three: Cancer Sun, Scorpio Moon, Cancer Rising
An attorney and storyteller, Desiree L. Talley meshes relatability with her legal smarts for the culture. She advocates for cultural advancement and societal change through her POPLAW Podcast while balancing her executive duties at Revolt TV.
Marley Rae
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Marley Rae, Organizer, WalkGood
Representing: Los Angeles
Ultimate ItGirl Song: "Nice For What" by Drake
Favorite OG It Girl: Mariah Carey
Zodiac Big Three: Capricorn Sun, Taurus Moon, Leo Rising
Marley Rae is a Nike Athlete, certified yoga instructor, COO, and Director of Health and Wellness for WalkGood LA, a family-founded non-profit organization. She is dedicated to fostering understanding and care in local and global communities.
MIDWEST
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Shawnee Dez
Representing: Chicago
Ultimate ItGirl Song: "FreeBody Freestyle" by Shawnee Dez
Favorite OG It Girl: Toni Morrison
Zodiac Big Three: Cancer Sun, Aquarius Moon, Cancer Rising
Shawnee Dez is an artist who's all about captivating her audience through encouragement and empowerment. Her music features fluid harmonic layering, live instrumentation fused with digital production, and her unique multi-talented voice in an alto melodic tone.
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Bianca Pastel, Visual Artist
Representing: Chicago
Ultimate ItGirl Song: Anything by Whitney Houston
Favorite OG It Girl: Grace Jones
Zodiac Big Three: Taurus Sun, Leo Moon, Sagittarius Rising
Bianca Pastel's artistic portfolio includes fine art, illustrations, and animation, and she's worked with clients including Disney Pixar, and the NFL, to name a few. Her focus is "empowering the experience of being a Black child and dealing with mental health issues."
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Donyale Walton, Founder, Hoop Mobb
Representing: Detroit
Ultimate ItGirl Song: "Yeah I Said It" by Rihanna
Favorite OG It Girl: Aaliyah
Zodiac Big Three: Virgo Sun, Libra Moon, Capricorn Rising
Donyale Walton's brand Hoop Mobb, celebrates the Black and Brown fashion and cultural impact and presence of hoop earrings. It's grown to earn more than seven figures in annual revenue and a nationwide community of loyal consumers.
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Ticara Devone, Content Creator
Representing: Chicago
Ultimate ItGirl Song: "She's a Bitch" by Missy Elliott
Favorite OG It Girl: Ananda Lewis
The Zodiac Big Three: Libra Sun, Taurus Moon, Virgo Rising
A trusted sneaker enthusiast and content creator, Ticara Devone uses dynamic storytelling to hold space for others with a passion for sneakers. A published writer, she’s worked with brands including Nike and Footlocker and inspires us all by ensuring women are vocal and seen in the multi-billion dollar shoe space.
SOUTH
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AllyiahsFace, Content Creator
Representing: Atlanta
Ultimate ItGirl Song: "Go Off" Doja Cat
Favorite OG It Girl: Gabrielle Union and Halle Berry
Zodiac Big Three: Gemini Sun, Leo Moon, Scorpio Rising
AllyiahsFace's YouTube channel has more than 830,000 subscribers, and she's been hitting the ground running since 2015. Her content creation, which centers on beauty, fashion, and lifestyle, has led to a lucrative career and drawn a close-knit social and real-life community to view and be inspired.
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Jaycina, Executive Director, Tender
Representing: Atlanta
Ultimate ItGirl Song: "All I Got" by Amel Larrieux
Favorite OG It Girl:Tracee Ellis Ross
Zodiac Big Three: Leo Sun, Sagittarius Moon, Sagittarius Rising
Jaycina is a signed model with a nonprofit that works to provide support and community for single mothers in Atlanta. She's also appeared in campaigns for brands including Fenty and GAP as well as features in all your favorite magazines and on billboards across the country.
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Asha Christian, Founder, Coily App
Representing: Atlanta
Ultimate ItGirl Song: "It's My Life" by Mariah Carey
Favorite OG It Girl: Toni Childs (Girlfriends)
Zodiac Big Three: Sagittarius Sun, Leo Moon, Leo Rising
Asha Christian created Coily to provide beauty recommendations utilizing social data. It offers a more personalized, AI-driven experience for users and part of her mission is to provide solutions related to diversity and put the focus back on the consumer. Meshing tech and culture, Christian is innovating with options that exemplify the Black girl magic needed in tech.
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Featured image by FG Trade/Getty