| More APIs needed for marrow donations While some 360,000 potential donors exist among Asian and Pacific Islanders, far fewer actually step up to volunteer their help to save a life, according to the National Marrow Donor Program and its affiliate, the Los Angeles-based Asians for Miracle Marrow Matches. |
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You are Vietnamese and your doctor tells you that you need a bone marrow transplant to fight a potentially deadly blood disease that has just been diagnosed. Such an operation requires a match of certain tissue traits between you and the donor, and because these traits are inherited, your best chance for a match is a family member. But none of your relatives turns out to be a match. Now, short of a donation from as-yet unknown kin, your only hope for a bone marrow match likely can be found in someone of your same race or ethnicity. While some 360,000 potential donors exist among Asian and Pacific Islanders, far fewer actually step up to volunteer their help to save a life, according to the National Marrow Donor Program and its affiliate, the Los Angeles-based Asians for Miracle Marrow Matches. “Marrow types can be traced to their geographic origin and therefore ethnicity matters when searching for a match, and the API community is under-represented” in the program, said Madhuri Mistry, an A3M spokeswoman, whose organization conducts regular donor drives of this ethnic group. “For a patient, finding a perfect match in time is important. Asian patients often have to wait months or even years to find a donor. “Having a larger pool of donors offers a better chance to patients in search of a life-saving bone marrow donor,” Mistry added, especially for those suffering from life-threatening blood disorders that could potentially be cured by this type of transplant.” Such operations actually may help people stricken with more than 60 blood disorders, and for diseases like leukemia, aplastic anemia and other blood-related cancers, “bone marrow transplant is a known potentially life saving treatment,” she notes. What’s important for potential donors to realize is that “if you come up as a match, you registered knowing that you may be able to save a life and that life is waiting at the other end to receive your donation. You made a commitment to help,” Mistry said. And it’s crucial to keep your word, even if you resettle elsewhere. She cites one example. “Say a young Vietnamese (or other API) registers on campus and gives his parents’ telephone number as his permanent number. Then they get a call, but they don’t give their son the message. Sometimes the parents don’t want them to give the donation,” she said, adding that too often, a matching donor backs out once contacted by program workers. “We have been facing a lot of these kinds of things,” even while “the person needing the donation could be a 2-year-old, a 20-year old... It could be somebody’s mother or somebody’s child. My advice is to educate yourself. You could be the only person who is a match. You could be their only chance. Any given day, 3,000 patients, including Asians and Pacific Islanders, are waiting for bone marrow donations.” ABCs of marrow or blood cell donation What is a marrow or blood cell transplant? A marrow or blood cell transplant is a potentially life-saving treatment for patients with leukemia, lymphoma and other blood diseases. A transplant replaces a patient’s unhealthy blood cells with healthy blood-forming cells from a volunteer donor. The three sources of blood-forming cells are marrow, blood-forming cells collected from the blood (called a PBSC donation) and umbilical-cord blood. How are patients matched with donors? Blood samples from adult donors or cord blood units are tested, and the tissue type is added to the National Marrow Donor Program registry. Doctors can search this database when they need to find a donor whose tissue type matches their patient’s. How does a person’s race or ethnicity affect matching? Because tissue type is inherited, patients are most likely to match someone of their same race and ethnicity. There is a special need to recruit more donors who identify themselves as: Asian, Hawaiian or other Pacific Islander, Black or African American, American Indian or Alaska Native and Hispanic or Latino. How are blood-forming cells collected? Marrow donation is a surgical procedure performed in a hospital. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor’s pelvic bones. Many donors receive a transfusion of their own previously donated blood. PBSC donation takes place at an apheresis center. To increase the number of blood-forming cells in the bloodstream, donors receive daily injections of a drug called Filgrastim for five days before the collection. The donor’s blood is then removed through a sterile needle in one arm, passed through a machine that separates out the cells used in transplantation, and the remaining blood is returned through the other arm. Cord blood is collected from the umbilical cord after a baby’s birth. It is then taken to a cord blood bank where it is tested. Cord blood units that meet eligibility standards are frozen and stored for future use. The collection does not pose any health risk to the mother or baby, and does not affect the birth process in any way. Does donating hurt? What are the side effects? Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Donors also have reported feeling tired and having some difficulty walking. Most, though, are back to their usual routine in a few days but some may take two to three weeks before they feel completely recovered. PBSC donors report varying symptoms including headache, bone or muscle pain, nausea, insomnia and fatigue while receiving injections of Filgrastim. These effects disappear shortly after collection. During the collection, donors may experience a tingling feeling or chills. These symptoms go away shortly after donating. When asked about their discomfort, most donors are quick to point out that it was worth it to help save a life, and they would be willing to do it again. How does a patient receive a transplant? After a patient undergoes chemotherapy and/or radiation treatment to destroy their diseased marrow, the healthy donor cells are given directly into the patient’s bloodstream. The cells travel to the marrow, where they begin to function and multiply. How does a person become a volunteer donor? Potential donors must be between the ages of 18 and 60 years old and meet health guidelines. A small blood sample is taken and tested to determine the donor’s tissue type. Individuals also complete a brief health questionnaire and sign a consent form to have their tissue type listed on the registry. How does one sign up to be a volunteer donor? Having met the age requirement, a simple blood test given through an authorized NMDP donor center or recruitment group to determine your HLA tissue type so it can be entered onto the National Registry. If there is not an NMDP donor center or recruitment group in my area, how can I join the NMDP Registry? Call the NMDP donor center or recruitment group nearest you. They may have a satellite office or a donor recruitment drive coming up in your area. Also, some centers will mail out blood-test kits after you fill out consent forms and return them to the center. Will it cost anything to be a donor? The cost for HLA tissue typing ranges from $45 to $96 depending on the donor center, the level of testing performed and the laboratory that analyzes the test results. Some centers can defer the cost of your testing by asking for a donation of whole blood or blood components. There also may be funding available through the donor center. After the initial testing, all medical expenses are covered by the recipient or the recipient’s insurance. Please contact your local center for further information. What is the marrow or blood-cell donation process? When you donate marrow, it is removed with a surgical needle from the back of your pelvic bone. All marrow donors are given either general or regional anesthesia. Usually, four to eight tiny incisions are made in the pelvic area. These incisions are so small that stitches are not necessary. The procedure lasts between 45 and 90 minutes. Marrow is constantly regenerating itself and is replaced within several weeks. For a donation of peripheral (circulating) blood cells, the donor receives one injection of Filgrastim each day for four to five days. Filgrastim is a drug that increases the number of blood-forming cells released from the bone marrow into the blood stream. The cells are then collected from the bloodstream through a process called apheresis. During apheresis, which is done at a blood center or a hospital, your blood is removed through a sterile needle placed in a vein in one arm and passed through an apheresis machine that separates out the blood-forming cells. The remaining blood, minus the blood-forming cells, is returned through a sterile needle placed in a vein in the other arm. What are the risks for the bone marrow donor? Bone marrow donation is a surgical procedure. There is minimal risk involved. Serious complications are rare but could include anesthesia reactions, infection, transfusion reactions, or injury at the needle insertion sites. With a marrow donation, donors can expect to feel some soreness in the lower back for several days or longer following the donation. Peripheral (circulating) blood cell (PBSC) donors may experience bone pain, muscle pain, nausea, insomnia and fatigue while receiving injections of Filgrastim. Bone pain and headaches have been the two most frequently reported symptoms. These effects disappear promptly when the collection is complete. During the apheresis procedure some donors experience a tingling feeling from the anticoagulant used to keep the cells from clotting. Others experience chills. These effects are relieved after the donation is complete. Can I get tested for a specific patient such as a family member or friend? The NMDP maintains a registry of unrelated potential donors willing to help any patient that they might match. Individuals can be tested through the NMDP and ask for a copy of their results at the time of testing. If they are interested in getting tested only for a specific friend or family member, they will need to have the blood test done privately. For private testing, contact the patient’s transplant physician for suggestions. I’ve already been tested for a family member and would like my results added to the NMDP Registry. How can I do this? Obtain a copy of your HLA tissue typing and contact the NMDP Donor Center in your area for information on joining the registry. The donor center will have you fill out some health history forms and a consent form. The center then will place your results into the registry so you will be cross-referenced for any patient searching the registry for an unrelated marrow or blood cell donor. Why does a person have to be 18 to be a donor? Can’t my parents sign the consent form for me? NMDP standards require that volunteer marrow donors must be between the ages of 18 and 60. This is standard medical practice. The reason is because the donation is done through a surgical procedure and the person undergoing the procedure must be able to give his or her informed consent. A guardian or parent is not able to sign a release because unrelated marrow donation is a voluntary procedure and is not beneficial or lifesaving to the donor. How do I get involved in organizing a recruitment drive and/or ordering NMDP materials (brochures, fliers, t-shirts, etc.)? If you are interested in organizing a drive to recruit potential donors for the registry, or in ordering materials, contact the NMDP donor center or recruitment group in your area. They have staff to assist you in setting up a drive. All of the donor centers keep a supply of NMDP materials for public distribution. Source: National Marrow Donor Program For details on donations: Visit www.asianmarrow.org or call (888) 236-4673, or go to www.marrow.org or call (800) 627-7692. |
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