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MARROW DONOR DRIVE - PLAIN TALK 3/3/98 NATICK, MA William Mesrobian Alique Topalian (age 4), of Cleveland, suffers from a rare form of leukemia. She has undergone chemotherapy and radiation treatment. Recently, her energy seems to have improved and there is room for some cautious optimism. However, a bone marrow transplant remains her best chance of survival. And the greater her strength, the better her chances of tolerating a transplant. Her family has been tested and no donor match has been found. Her next best chance is in the Armenian community, which is poorly represented in the records of the National Marrow Donors Program. Ethnicity is a key element in searching for a possible match. There are very few Armenians among the 3-million donors registered in the US. Your participation in a donor effort not only may help Alique, but it could also help some other Armenian who may be afflicted with this vicious disease. The test for a potential match begins with a small blood sample. Few of us have not had blood drawn. It is that simple. However, that sample is subjected to HLA (Human Leukocyte Antigens) testing, which is sophisticated and costly. Some of the cost is subsidized, but not all. It is for that reason that local community donor search drives are being organized in a structured fashion. If an individual goes to a marrow donor center, the lab fees can be higher. For example, a kit can be sent to you from a Marrow Donor facility and the cost will be in the range of $45-$60. You can then go to a local clinic or Red Cross facility, and have the blood drawn (possibly at no cost). However, if a community drive takes place, a lower fee may be arranged. (Please be aware that the Red Cross and other participating organizations have limited funds for this work and that lab tests are becoming more sophisticated and more costly.) Also, there is the convenience and sense of contributing to Armenian lives by being with other Armenians at a donor drive. Whether or not you are a donor candidate, financial contributions are solicited in any amount you can afford. Some costs are subsidized by "The Alique Topalian Fund" - a fund established at Key Bank, Cleveland, for the purpose of collection and distribution of funds that insurance does not cover. Please send your contributions to: The Alique Topalian Fund John Capka, Treasurer P.O. Box 29297 Cleveland, OH 44129 To be a donor, you must be 18-60 years in age, in good health, with no history or cancer or heart disease and within a moderate weight range for your height and bone structure. Your blood type does NOT matter. This is a tissue match, not a blood type match. For information, call the Marrow Donor Program: 1-800-MARROW2 general questions 1-800-654-1247 x149 more detailed information such as how to organize a donor drive. Or Call the Alique Topalian Message Line: 202-822-6245 All calls will be returned. There are donor drives scheduled every week in March in the US. For more information, call the Alique Topalian Message Line. The Topalian family extends their heartfelt thanks to the Armenian Community response in this life-saving need. GENERAL QUESTIONS: 1. What is the Marrow Donor Program. It is central clearing house for research and accumulation of information bone marrow information, along with a record of marrow typing for over 3 million Americans. It is affiliated with many other databanks across the world. If there is a possible donor match, they can find it. 2. Will it hurt? Having blood drawn is routine and is a pin prick. 3. What if I'm a match? Bone marrow will be drawn from you in an "out-patient" procedure. I have undergone this procedure and can honestly say that I've experienced much worse in the dentist's chair. (Plan on going to a hospital in the morning and leaving early afternoon.) You will be sedated (some people remain awake, some take a nap). Bone marrow will be drawn (most likely from the hip). This takes very little time. You'll spend more time getting prepared and resting after. For a few days, your hip will be sore (like a bruise) but it will not interfere with normal activities. You will not be told who will receive the marrow. The patient has a right to confidentiality. However, if you are not a match for Alique, it is quite likely that the recipient would be Armenian. However, it is your right to not undergo bone marrow donation. You cannot be forced to do this if you don't wish to. 4. What other costs must I pay? None. 5. How does this help Armenians? The more Armenians who are registered marrow donors, the greater the chances of finding a match for some other Armenian who may have leukemia. While conducting research for Alique, I have learned of an Armenian in Canada and another in the US who died while waiting for a transplant. I learned of a third who is still waiting. Also, as the medical infrastructure develops in Armenia, leukemia patients there will have access to the donor records everywhere in the world.
Source: Bill Mesrobian
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