When doctors completed the first successful bone marrow transplant in 1968, their discovery charted a new course for the treatment of leukemia, aplastic anemia and many other life-saving blood diseases.
This breakthrough gave critically ill people an option that never existed before. Although many of these potentially fatal blood diseases go into remission, they will eventually claim the lives of their victims. With the possibility of finding a marrow donor match on the National Marrow Donor Program registry, these patients' odds of living a normal healthy life increase dramatically.
Tissue types are inherited, therefore, a patient's best chance of finding a matched donor is within his or her family, or if that search is unsuccessful, with someone else from the patient's own ethnic or racial group.
Only 30 percent of those who need marrow transplants will find matched donors within their families. The rest must search for unrelated donors.
If a volunteer
is ever matched with a patient in need and is unable to donate, the volunteer's
sibling may also be a matched donor for that patient because of the shared
genetic background. Please share this information with your siblings;
it could be vital for a searching patient.
Marrow is found in the cavities of the body's bones. It resembles blood and contains stem cells, which produce red cells, white cells and other blood components.
Marrow transplantation has become the only real "cure" for many diseases. Approximately 75 percent of all transplants facilitated through the NMDP are for patients who have been diagnosed with some form of leukemia. Marrow transplants are also a treatment for patients with anemia, lymphomas, and a number of other life threatening blood diseases.
Why become a volunteer marrow donor?
Each year, an estimated 30,000 children and adults in the US are diagnosed with leukemia, aplastic anemia or other fatal blood diseases. For many, the only hope for survival is a marrow transplant.
Unfortunately, nearly 70 percent of these patients cannot find suitable matched marrow donors within their own families. They need to find unrelated marrow donors - people who have volunteered to donate marrow if every matched with any patient in need.
How does the National Marrow Donor Program work?
The NMDP is a network of donor centers (which recruit and educate volunteer donors), transplant centers (hospitals that care for patients and recipients), collection centers (hospitals that meet the NMDP's standards for marrow collection) and recruitment groups (which assist the NMDP in educating and recruiting new volunteers). You can join the NMDP registry when you donate blood at Community Blood Centers of South Florida. You must be between 18 and 60 years old and in good health.
What is the chance of matching a patient?Once you have signed your consent form to join the registry, a sample of your blood is "tissue-typed" at a medical laboratory to identify your antigens. The odds of matching a patient vary widely, depending on the rarity of the patient's tissue type. This means a volunteer may never be called. However, if identified as a matched donor, the volunteer may be the only person who can provide lifesaving marrow to that patient.
When a volunteer matches, what's next?
Once additional laboratory tests have determined that a potential donor matches a patient, the volunteer must decide whether to donate.
Before making a final commitment to donate, the potential donor attends a thorough information session with his/her donor center personnel. Often, the prospective donor's spouse or other family members are asked to participate in this conference or to review the extensive educational materials.
After the information session and a thorough physical examination, the potential donor decides whether to become a donor. Before signing the Intent to Donate form, the potential donor must be certain about his or her decision to donate marrow.
After the donor signs the "intent," the potential recipient undergoes a pre-transplant treatment of chemotherapy and/or radiation therapy to wipe out all disease. Because the treatment destroys the immune system, the potential recipient will most likely die if he or she does not receive a marrow transplant.
All the donor's medical expenses relating to donor matching, work-up and collection are paid by the NMDP who in turn bills the patient's transplant center. Although many employers offer paid time off to donate marrow, some donors have found it necessary to take unpaid time off from work or use personal vacation time.
The decision to participate as a marrow donor is a serious matter. A volunteer donor who is successfully matched with a transplant candidate may decide not to go ahead with the process. There are legitimate reasons for saying "no," including illness, the amount of time involved, the risk, or even fear. The NMDP's participating centers always respect the decision of the donor. If you have any doubts about whether you would be willing to actually donate marrow, it is best to delay joining the registry until you are sure.
Uncommitted donors give false hope to patients awaiting transplants. Also, remember that although a volunteer donor may decline at any stage in the process, once he or she signs the Intent to Donate form, the patient begins pre-transplant treatment and will most likely die without the transplant.
While many of the NMDP's donors have described the predonation time as "exciting," it required a strong psychological commitment. A complete physical examination is arranged to ensure that the donation is as safe as possible for both the donor and patient. Sometimes, the physical exam identifies an otherwise undetected health problem, indicating the marrow should not be collected from the potential donor or that the procedure should be delayed. This often creates extreme disappointment for the donor, as well as the patient.
Those who pass the physical are not asked to make any accommodations in diet, work or social habits before the marrow donation. However, donors are asked to refrain from taking any unnecessary risk which could lead to illness or injury during the period when the patient is undergoing the pretransplant regimen. Doctors want both the patient and donor to be in the best possible shape for transplant.
Prospective donors will be asked to donate their own blood -- an autologous donation -- before the marrow collection. The autologous units will replace any blood that is removed with the marrow.
Typically, the donor enters the hospital on the day of the marrow donation. Donors remain in the hospital for several hours or overnight after the marrow collection.
All donors receive general or regional (spinal or epidural) anesthesia for the procedure. The liquid marrow is removed from the rear of the pelvic bone using a special needle and syringe. The process generally lasts one hour.
The amount of marrow taken depends on the weight of the recipient; does not affect the white cell or platelet count; and is completely repenished in 4-6 weeks.
Is the marrow donation painful?
Because anesthesia is used, the collection procedure is painless. Donors can expect to feel some discomfort in their lower back for several days following the donation. Some donors compare the discomfort to the pain experienced after falling on their tailbone, while others describe it as similar to muscle pain.
As with any procedure involving anesthesia, there is a minimal amount of risk. The chances that a complication would arise from a marrow donation are very low. A number of health questions are asked when individuals join the registry to be sure that the volunteers are in good general health. Before actually becoming a donor, a volunteer will receive a thorough physical examination.
After the patient's own marrow has been destroyed through a rigorous treatment of chemotherapy and/or radiation to wipe out the disease, patients receive the donated marrow intravenously, much like a blood transfusion.
Once the donated marrow enters the patient's circulatory system, it takes about one month to see the first evidence of a "graft," meaning that the marrow has begun to work and is producing new blood cells. A noticeable rise in the patient's white blood cell count is the first sign that a graft has occurred.
Not all potential recipients survive the intensive pre-transplant chemotherapy and radiation treatment. In addition, other complications may result after the transplant, including non-engraftment, rejection, graft vs. host disease (the marrow fights the patient's body), infection (as a result of destroying the patient's entire immune system in preparation for transplant), and relapse (the original disease reappears in the marrow).
While doctors do not yet fully understand the causes of these complications, one thing is clear: any complication to the patient is not caused by the donor's marrow. Before transplant, the donor's tissue type is examined and analyzed to ensure that the transplanted marrow is the best possible match for the patient.
Is joining the registry right for me?
Deciding to participate in the NMDP Registry is worthy of your most careful consideration. We have introduced you to marrow transplantation and answered some questions that volunteer donors most frequently ask about marrow transplants and the donation process.
Community Blood Centers of South Florida and the National Marrow Donor Program encourages prospective volunteers to think carefully before becoming an NMDP volunteer donor. The decision is an individual one.
Do the patient and donor meet?
Volunteer unrelated marrow donation is done anonymously through the NMDP. For at least the first year after the transplant, the donor and recipient may communicate only in anonymous writing through the NMDP system. If both the patient and donor wish to meet after that time, NMDP coordinators may assist in the process.
Because tissue type is inherited much like hair and eye color, it is more likely that a patient will find a donor in the same racial or ethnic group.
Of the 4 million potential donors listed on the Registry, only 1 million (25%) are donors of color. This gap needs to be narrowed. While the NMDP welcomes everyone who is eligible and willing to volunteer, there is a critical need for more donors from the African American, Hispanic, Asian & Pacific Islander, and American Indian/Alaska Native communities. By diversifying the registry, the NMDP will be able to offer all patients a chance of finding an unrelated marrow donor.