The story of Sam Kimura
When Sam Kimura, a co-founder of Sharing America’s Marrow (SAM), was diagnosed with a rare blood disease — severe aplastic anemia — and her sister wasn’t a match, her family started a quest to find a donor for Sam and thousands of other patients fighting blood cancer and other blood diseases.
“Every year, more than 30,000 Americans are diagnosed with a blood disease. Only 30 percent are able to find a compatible bone marrow donor in their family,” according to Don Stevens, M.D., medical oncologist with Norton Cancer Institute.
SAM holds registration drives called “donor jams” around the country. They encourage people to sign up for the national bone marrow donor registry through Delete Blood Cancer, hoping that the 70 percent of patients who need an unrelated donor can find one and have a second chance at life.
If you are considering becoming part of the bone marrow donor registry, or are curious about the process, here are answers to some frequently asked questions.
1. Is there more than one national bone marrow donor registry?
No. Many groups may raise awareness and hold donor registry drives, but the Be the Match Registry, operated by the National Marrow Donor Program, is the only national bone marrow donor registry.
2. What is the process for being added to the donor registry?
Registration is simple, quick and painless. All it requires is a swab of cells from the inside of the cheeks. The cells are tested and the potential donor’s name is entered into the bone marrow registry.
3. What is bone marrow donation?
Bone marrow donation is a method of collecting blood-forming cells for bone marrow transplants. The surgical procedure takes place in a hospital. If you are found to be a match for a patient, a doctor will withdraw liquid marrow from both sides of the back of your pelvic bone. The donated marrow is then transported to the patient’s location for transplant.
4. Are there age restrictions for potential donors?
Yes. Prospective donors should be between the ages of 18 and 60 and in good health.
“Research has shown that cells from younger donors lead to more successful transplants,” according to Dr. Stevens.
For this reason, donors ages 18 to 44 are called on as a match for a patient 90 percent of the time. The age limit for joining the registry and donating bone marrow is age 60. This restriction is not meant to discriminate, but to help ensure the best outcome for the donor and patient.
5. How long will my name remain in the registry?
Your name will remain on the bone marrow registry list until you turn 61, unless you ask to have it removed. If you move or your contact information changes after you register, call the National Marrow Donor Program at (800) MARROW-2/(800) 627-7692 to update your information.
6. Does race or ethnicity affect matching? Are some races or ethnicities needed in the registry more than others?
Yes. Because patients are more likely to match with a donor of similar ancestry, it is important for individuals of all ethnic backgrounds to join the registry. The more diverse the registry becomes, the better the chances that all patients will find a life-saving match.
According the BeTheMatch.org, members with the following ethnic backgrounds are especially needed:
- Black or African American
- Native American or Alaskan Native
- Asian, including South Asian
- Native Hawaiian or other Pacific Islander
- Hispanic or Latino
- Multiple races
7. If I register, can I change my mind later?
You can change your mind about being a donor at any time. If you decide you no longer want to donate, call the National Marrow Donor Program at (800) MARROW-2/(800) 627-7692 to have your name taken off the list. Notifying the program also allows doctors to search for another donor without delays for the patient.
8. How can I verify that I am on the bone marrow registry?
If you have previously joined online or in person, you are already part of the Be the Match Registry. If you provided a blood sample or cheek cell sample to be tested for the registry, you do not need to join again. If you are unsure, call the National Marrow Donor Program at (800) MARROW-2/(800) 627-7692.
9. Why should I join the bone marrow registry?
“By joining the registry, you offer hope to patients with life-threatening illnesses such as leukemia, aplastic anemia, lymphoma, sickle cell anemia and other blood disorders. You will provide an opportunity for a patient to find a life-saving match,” says Dr. Stevens.
Want to help save a life?
Consider joining the Be the Match Registry of bone marrow donors.