Every year, thousands of people, including those with Myelofibrosis and other blood cancers, reach a point where their only hope for a cure is a stem cell transplant. For 70% of these patients, a matching donor cannot be found within their own family, meaning they must rely on the selflessness of a stranger on the national registry.
The Desperate Need for Diversity
Because the genetic markers (HLA) used to match donors and patients are inherited, you are most likely to match someone who shares your ethnic background.
Currently, the registry is predominantly Caucasian, leaving minority and multiracial patients at a severe disadvantage. The chances of finding a match vary drastically by ethnicity:
- White patients: ~79% chance
- Hispanic/Latino patients: ~48% chance
- Asian/Pacific Islander patients: ~47% chance
- Black/African American patients: ~29% chance
If you are from a non-Caucasian or multiracial background, your presence on the registry is not just helpful, it is critical. You could be the only person in the world who can save a specific patient’s life.
Step 1: How to Register
Joining the registry is free, simple, and takes less than 10 minutes.
- Check Eligibility: Generally, donors must be between 18 and 35 (doctors prefer younger donors because their cells lead to more successful transplants) and in good health.
- Order a Kit: You can request a free kit online from organizations like NMDP (formerly Be The Match) or DKMS.
- The Swab: When the kit arrives, you’ll rub a cotton swab on the inside of your cheek and mail it back in the prepaid envelope.
- The Waiting List: Once your tissue type is analyzed, you are added to the global database. Most people stay on the registry for years and may never be called, but you remain a beacon of hope just by being listed.
Step 2: If You Are Selected
If a doctor identifies you as a potential match, the registry will contact you via phone, text, or email.
- Confirmatory Testing: You’ll provide a blood sample to confirm you are the best possible match for the patient.
- Health Screening: You’ll undergo a physical exam and health questionnaire to ensure the donation is safe for both you and the recipient.
- Counseling: A donor coordinator will walk you through the entire process, including any risks and logistics.
Step 3: The Donation Process
There are two ways you might be asked to donate. The patient’s doctor chooses the method that offers the best chance of success.
- Peripheral Blood Stem Cell (PBSC) Donation (90% of cases): This is a non-surgical, outpatient procedure similar to donating plasma. For a few days before, you’ll receive injections to move stem cells into your bloodstream. On donation day, blood is drawn from one arm, passed through a machine that filters out the stem cells, and returned through your other arm.
- Bone Marrow Donation (10% of cases): This is a surgical procedure performed under general anesthesia. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. You are asleep the whole time and typically go home the same or next day, though you may feel some soreness in your lower back for a few days.
Note on Costs: The registry covers all costs related to the donation, including travel, lodging, and meals for you and a companion. You will never pay to save a life.
https://www.nmdp.org/get-involved/join-the-registry
https://www.dkms.org/get-involved/become-a-donor