Seven years ago this week, my Aunt Elise passed away, in part from the complications of multiple myeloma, a rare but typically quite treatable cancer of the white blood cells. One of the most effective treatments for this disease is a stem cell transplant, using either donor cells or a self-donation from the patient before chemotherapy or other treatments begin. It haunts me every day that this option wasn’t pursued in my aunt’s case.
Last summer I read about becoming a stem cell and bone marrow donor through Be the Match, and I immediately sent away for the kit to be added to the registry. Transplants can dramatically improve the treatments and prognosis – or outright cure – many blood cancers like leukemia or lymphoma, sickle cell anemia, and autoimmune disorders. Because it is so important to match the HLA (human leukocyte antigen) markers between donor and patient, establishing this internationally-linked registry allows for doctors to more efficiently match patients with donors and sometimes find the proverbial needle in the haystack to treat cases with rare HLA markers.
I highly encourage you to read more about the process and this excellent project. If you are between 18-44, it is free to be added to the registry. You receive a swabbing kit in the mail, swab your cheek cells, and mail it back. In a few weeks, you will receive confirmation that your HLA markers have been sequenced and you’re assigned a registry number and card to confirm your status as an active donor.
Should you match with a patient in need, you will be contacted for the next steps in the donation process. A very small percentage of donors are successfully matched (currently about 1 in 430), but I would consider it a great honor to be able to provide a life-saving donation to someone in need.
I encourage you with all my heart to get started in joining the registry today. Patients are most likely to match with a donor with a similar ethnic background, so if you know your ethnicity is less commonly represented in the general population, I especially hope you’ll consider registering.
Also please note that because stem cell and bone marrow donations are typically most successful from a live patient, they are not usually included in the general organ donation checkbox on your driver’s license. By having your HLA markers sequenced, you will show up in the database for doctors seeking to help patients as soon as possible.
If you don’t meet the donation requirements for age or health (I sympathize – I am perpetually unable to donate blood because of anemia) you can help in many other ways, including making a financial donation, fundraising or volunteering, legislative advocacy, or simply share information about the registry so others in your life may be able to join.