Being an Unrelated Donor
You could be someone's hero - someone you don't know and may never meet, but to whom you can give the gift of life. How? By becoming a bone marrow, peripheral blood stem cell or cord blood donor.
If you are between the ages of 18 and 60 and would like to volunteer to be a donor for someone with a life-threatening illness, join the National Marrow Donor Program's Be the Match Registry® of donors. More than seven million people have joined the registry and that number is growing.
Since doctors choose younger donors more than 90 percent of the time, if you are age of 45-60, you will be asked to donate $100 to cover tresting costs if you enroll through the Be the Match web site. However, if you are age 18-55 you can enroll in the registry through DKMS (DeleteBloodCancer.org) for free.
The medical guidelines for joining the registry and how to sign up are explained on the Be the Match® web site. Volunteers must be willing to donate to any patient who needs a transplant and be a resident of the U.S. or Puerto Rico. There is sometimes a fee to join the registry. Contact the National Marrow Donor Program at 1-800-627-7692 for details.
If you live outside the U.S. or Puerto Rico, you will need to contact a donor recruitment center in the country where you live. You can find a list of donor registries outside the U.S. on the Bone Marrow Donors Worldwide web site.
HLA Tissue Typing
To register as a potential donor, the Be the Match® Registry will need to know your HLA or human leukocyte antigen type. Human leukocyte antigens are markers on your cells that help identify what belongs in your body. Your HLA type needs to match the patient's in order for you to be his or her donor.
Your HLA type can be determined by taking a swab of cheek cells from inside your mouth and sending them to a special laboratory for analysis. The Be the Match® Registry can send you a kit in the mail and instructions on how to do this, or you may be able to have this test done locally at a bone marrow donor recruitment drive.
HLA type is different than blood type. You do not need to have the same blood type as the patient's in order to be his or her donor.
Getting the Call to Donate
Some people join the Be the Match® Registry and are called upon to donate within a matter of months. Others wait years or are never called at all. If you move after joining the registry, be sure to update your contact information with the Be the Match Registry® so that they can find you if someone needs you as a donor.
If you are called upon to be a donor, you will receive extensive counseling about the donation procedure from a Be the Match Registry representative. You may be asked to provide a blood sample for additional tests to confirm that you are a good match for the patient. You will have the opportunity to ask questions about how donating will impact your health and what type of time commitment is involved before making a final decision about whether or not to donate.
The Medical Procedure
The medical procedure you will undergo is described in the stem cell/ bone marrow collection section of our web site. In most cases, the medical procedure will have a minimal, short-term impact on your health. If you are donating bone marrow, you may feel some soreness in your lower back for several days or weeks after donating. If you are donating peripheral blood stem cells, you may develop flu-like symptoms while taking the drug used to move the blood stem cells from the bone marrow into the bloodstream. These symptoms go away once you stop taking the drug.
However, as with all medical procedures, there is a small chance that you may experience side effects that are more severe. Before you agree to be a donor, you will need a physical exam to determine whether donating is safe for you. Be sure to share with the doctor your complete medical history including illnesses and surgeries you have had in the past, even if you don't think they are important, as well as any current health conditions.
The patient to whom you are donating bone marrow or peripheral blood stem cells may live in any part of the world. You will not have to travel to the patient's hospital. The bone marrow or peripheral blood stem cell collection will be done at a facility near you, and a courier from the Be the Match Registry will personally deliver your cells to the patient's hospital.
Who will get my marrow or stem cells?
Many donors want information about the person to whom their cells will be given. Although you will not be told the patient's name, you will be given some information such as whether the person is a child or an adult, and the patient's gender and diagnosis. You may be able to learn the patient's identity and how to contact him or her one year after transplant, provided the patient agrees to share this information.
Some Things to Consider
Before you join the registry, think carefully about whether or not this is a commitment you want to make. Although you can always change your mind after signing up, this can cause emotional distress for a patient's family, particularly if you are the only potential donor for the patient.
Agreeing to donate your marrow or stem cells can be a very emotional decision. You may be elated at the opportunity to give someone a second chance at life, and at the same time worry that your marrow or stem cells may not be "good enough" to make the transplant successful.
Many factors determine whether or not the transplant will be successful including the patient's age, diagnosis, stage of the disease and prior treatment. You are not responsible for the outcome of the transplant. You will have done your best by donating your cells, which will hopefully give the patient many more years of life.
For More Information
The Be the Match® web site has very detailed information about what is involved in being a donor. You can also call Be the Match at 1-800-627-7692 if you have questions.