Two years ago I joined the National Bone Marrow Donor Program, inspired by my dear friend Karen Shollenberger. Karen received two bone marrow transplants, from each of her siblings, during her 13-year battle against acute lymphoblastic leukemia (ALL). She explained to me the importance of joining the registry and how impactful a donor can be on the life of someone battling leukemia. Last week, Karen passed away, and her story continues to inspire me and others to make an impact.
Honestly, before meeting Karen, my extremely limited knowledge of bone marrow transplants came from a couple episodes of “House.” Thankfully, Be The Match was able to provide me with more than enough information to understand what it is to be a bone marrow donor and why it is important to join the registry.
A bone marrow transplant is used to help patients with leukemia, as well as bone marrow diseases, lymphomas, and metabolic disorders, among other illnesses. For some people suffering from these diseases, a transplant is the only potential cure. A transplant is used to replace a patient’s unhealthy blood-forming cells with the donor’s healthy ones. Marrow produces blood-forming cells that can grow into red blood cells to carry oxygen throughout the body, white blood cells to help fight infections, or platelets that help control bleeding.
A donor’s odds of being called upon to donate are 1 in 430, due to the critical matching factors. (I haven’t been called to donate as of yet.) Donors are matched to patients based on human leukocyte antigen (HLA) tissue type, since this is the most important factor. These are proteins found on cells in your body. Matching HLA tissue type between patient and donor is crucial because these proteins, or markers, are used to recognize which cells should be in your body and which shouldn’t.
Other factors that are considered are the donor’s age, gender, height, weight, and blood type, all in comparison to the patient. While donors of all types are encouraged to join the registry, Be The Match focuses on recruiting those between the ages of 18-44. Medical research has proved that younger donors increase the transplant’s chance of success, in addition to the fact that younger people tend to have fewer health issues and can be more easily matched. Currently Be The Match is stressing the need for male donors aged 18-35. This is because men have more body mass than women, meaning they have more marrow. Regardless, all types of people should consider the impact they can have by joining the registry.
Some patients in need of a transplant, like Karen was, are fortunate enough to match with members of their family. Unfortunately, 70% of patients who need a transplant do not have a matched donor in their family. These patients have to rely on matching through the National Bone Marrow Donor Program.
There are two methods of donation: bone marrow and peripheral blood stem cells (PBSC). For the first, the liquid marrow is extracted from the back of the pelvic bone through a needle while the donor is under anesthesia. The second, requires 5 days of filgrastim injections to increase the donor’s blood-forming cells in the bloodstream. During the donation, a needle in one arm is used to remove the blood and pass it through a machine to separate the blood-forming cells, then the remaining blood is returned to the donor through another needle.
If you are designated as a match and called to donate, this will be done in one of the methods described above. The selected method will be based on what doctors feel is best for the patient based on their medical needs.
You can join the bone marrow donor registry in one of two ways: find a registry drive near you or join online at bethematch.org. If you join online, you will be sent a cheek swab kit in the mail. Follow the simple instructions and mail back the kit. You’ll be contacted once the materials have been received and you’ve officially been added to the registry. This isn’t a decision to take lightly, but it could have substantial impact on someone’s life.
If you want to support in other ways, Be The Match accepts financial donations, which are critical in both helping patients and supporting the National Bone Marrow Donor Program. Financial gifts are used to assist patients with financial burdens, fund donor recruitment, and support life-saving research, such as clinical trials and observational studies.
I can’t express how much it would mean if someone reading this decided to join the registry. Karen was an advocate for joining the registry, and educated people about the importance of doing so. She even held an on-campus event at Drexel University to share information, answer questions, and give people the opportunity to join the registry.
I don’t think words can do justice to explain the type of person Karen was. She was strong, fearless, loving, and the best friend any of us were lucky to have known. Members of my alma mater’s newspaper came together to write a special piece on Karen after hearing the news of her passing. She impacted us in a way we can hardly express through those words.
Karen didn’t get a cure. But she did get time. All thanks to her bone marrow transplants, she was able to spend a bit more time with us all. We are tremendously grateful for the time we had with Karen. Because of her, I want to give someone else that same opportunity. That’s what I joined the registry.
(All information has been sourced from Be The Match.)