A Little-Known Way to Be the Change
Join Be The Match®: An Individual Choice with Real-World Impacts
Audio to be uploaded soon**
Last year, I came across an Instagram post from @SwabForCaryn detailing her story and highlighting the need for more people to sign up for the Be the Match registry (more information below). This week, I was so excited to see that her campaign was a success, and it got me thinking.
These days, there are a lot of ways we are called to take action on issues by making a personal choice to “take a stand” and “be the change.” I’m not going to lie to y’all, individual efforts can often feel pretty useless. How can my one action make a difference when, realistically, so many issues require large-scale overhauls to be addressed? But is this right here? This is something different. And I’m not here just telling you all about it; I believe in it so much that over 5 years ago, I made the decision to join the registry.
I believe in it so much that over 5 years ago, I made the decision to join the registry.
Joining the Be the Match registry means that I’m willing to be a future donor if matched to a patient. By doing so, I could literally save another person’s life from a curable disease. Getting started was easy. The only thing they needed from me was a cheek swab.
That’s it.
But enough about my life; let’s talk about the lives of individuals who are at the heart of why this registry matters. The Swab For Caryn campaign is an unfortunate, but all too common, result of our inability to find suitable matches for patients in need of donations.
Caryn’s Story
According to her Caring Bridge page, Caryn (Ren) is a 32-year old wife, pet-mom, and student pursuing her Master’s degree in Marriage and Family Therapy at USC. In March of 2022, she was diagnosed with a rare and aggressive form of leukemia. Leukemia is a cancer that typically affects white blood cells. For Caryn, the cure rate for this condition is only 10% with chemotherapy. But, and it’s definitely a BIG but, there is another treatment possible. Receiving a blood stem cell transplant could allow her body to produce healthy white blood cells. With this method, her chances of recovery are drastically different; Increasing from 10% to 70%.
How have Donations Helped Save Lives?
Bone marrow transplants have cured people of a number of diseases for decades. Examples include leukemias (like Caryn), some solid tumor cancers, and sickle cell anemia. Additionally, a really exciting use of bone marrow treatment was reported last year! A woman was cured of HIV because her bone marrow donor just so happened to be naturally immune to HIV. The purpose of her transplant was to address her leukemia. But after her transplant, she had no detectable viral load of HIV in her system. This was after 14 months of having no HIV treatment!
These outcomes are very possible for patients like Caryn, but unfortunately, access to their hope for a cure is out of reach.
What is Be the Match?
And this is where Be the Match® comes into play. Be The Match® is a United States-based registry of bone marrow donors. I’m going to take a brief break to read you this quick section from their website. I think that it beautifully highlights why they are here; “For patients diagnosed with leukemia, lymphoma, and other life-threatening diseases, a bone marrow or cord blood transplant may be their best or only hope for a cure.” Yet 70% of patients who need a transplant do not have a fully matched donor in their family. They depend on Be The Match® and our supporters to find a match to save their lives. (At Be The Match®) We also provide one-on-one support to patients and their families throughout the transplant journey.”
Be the match
Be The Match® is doing awesome work for so many people in the U.S., but there is still much more work to be done. Although they are the most diverse registry in the world for bone marrow donors, the number of available donors based on different ethnic backgrounds is not equal. According to the graphic below from their website, white people are most likely to find a match in the registry at 80%. On the other end of the spectrum, African Americans are only 29% likely to have a match when needed. And this likelihood is actually an increase from 2021, when that number was only 23%.
While it’s possible for people in different racial and ethnic groups to be matched, people of similar backgrounds are more likely to be matched. These disparities, or differences, in potential health outcomes, show us that there is a huge need for persons of all ethnic groups to learn about the process and to sign up to be potential donors.
African Americans are only 29% likely to have a match when needed.
So please, share this with your family and friends! Share this information without discrimination because any donors’ contributions increase the diversity of what’s available in the registry.
Become a Potential Donor: Join the Registry
I would also like to encourage you to consider registering to become a donor yourself. Click on the link here to learn more about the process and sign up to be added to the registry. The folks at Be The Match® make it super simple to do the cheek swap by mailing out a kit to you at no cost. They’ll even send the return label/container and prepay for shipping.
As of the time of this post (February 2023), Be the Match, in recognition of the health disparities African Americans face, will send you a limited edition Black History Month T-Shirt as a thank you! Check out the awesome artwork below.
When you sign up, let me know so we can celebrate together! Because you never know, Maybe you have the power to bridge the gap between a patient’s hope and a cure realized.
This was true for Caryn. As of August 2023, I am so proud to report that Caryn has received a stem cell donation! And for her to receive this life-changing treatment? All it took was being hooked up to an IV. Now, she’s in recovery. You can see the updates we mentioned on the @SwagForCaryn Instagram page.
Was this the first time you learned about bone marrow transplants and donation? Leave a comment to let us know! To learn more about Caryn’s story, Be The Match®, or to find out about registry options outside of the United States, see the information below.
Take Care Y’all!
– MissUnderstood
Links
Why Ethnicity Matters: Be the Match Diversity Statistics
Bone Marrow Databases for Countries outside of the U.S.
Wow! This was so informative! I am definitely going to put myself on the registry!