A genetic twin will help save a life
Tatiana Proskuryakova, Vesti
Finding a genetic double is a matter of life and death for thousands of Russians. Bone marrow donors often have to be sought abroad. In Russia, they are still sorely lacking. To remedy the situation, it was decided to seriously expand the national register of donors.
The world of three-year-old Vanya is limited to his parents' apartment. Going out for a walk, playing with other kids – simple children's joys are deadly for him. Vanya has a genetic disease: primary immunodeficiency. The child's body is not able to protect itself from the simplest infection. Only a bone marrow transplant can save the boy. But they could not find a donor in Russia.
"Neither I, nor my dad, nor my brother are suitable, none of our relatives, unfortunately, are suitable. We need to find a donor. The procedure is very expensive, it costs 45 thousand Swiss francs – about 2.5 million rubles," explains Olga Shubina, Ivan's mother.
Vova Kurbatov has been living in a hospital ward for the seventh month in the hope of hearing: your donor has been found. The teenager has a severe form of anemia. Every other day he gets a blood transfusion. The international donor bank found two people who are genetically similar to Vova. Whether they can help him is still unknown for sure.
"One donor is from America, the second is from Germany. Which of them will be checked faster, he will have a donor. Because time is running out, if this disease is not treated, it can turn into leukemia," says Oksana Kurbatova, Vladimir's mother.
A bone marrow donor was not found in Russia for Diana either. In two years, a girl with lymphoma has undergone 8 courses of chemotherapy. It did not give the desired result. But in the German register, 30 candidates suitable for the girl were found at once. This is not surprising, because there are 7 million potential donors registered in Germany. And in Russia there are only 64 thousand. Hematologists talk about the vital need to increase the national register to at least 500 thousand people.
"There are many patients with severe hematological and oncohematological pathology who have been waiting for months and sometimes years for a compatible donor. This is also a big problem. And only bone marrow transplantation can be the only saving method for them," says Elena Skorobogatova, head of the Department of Bone Marrow Transplantation of the RDCB of the Ministry of Health of Russia.
Bone marrow transplantation from a local donor does not require huge costs, and most importantly, it saves precious time. Moreover, it is possible to find a genetic double in a foreign bank only for half of our patients – too many nationalities live on the territory of Russia. The same genetic diversity should be in the register. That is why Orenburg appealed to national diasporas with a request to join the ranks of donors. The Koreans were the first to respond.
"If my blood helps someone, then I will be sure that I have not lived this life in vain," says the donor Ekaterina Kim.
During the procedure, only 9 milliliters of blood are donated. According to it, the unique composition of genes is determined and these data are entered into the national register, according to which, in just minutes, it is possible to determine the compatibility of the patient and the donor. If the genotype matches, doctors will offer two options: either a puncture is performed under anesthesia, or a special drug is given, after which blood is taken from the vein in the usual way. It is painless and absolutely safe for the donor. There are no health consequences. And for people like Sofia, this is the only chance of salvation from leukemia. The girl was transplanted in November. And the results of the tests for the first time in a long time give hope that soon she will finally come out of the sterile box in which she has been living since May.
3,000 people a year in Russia need a bone marrow transplant. And almost 600 of them die without waiting for their donor. Hematologists claim that the so-called genetic twin almost certainly lives with the patient in the same city, but is not on the register and simply does not know that it can easily save another person's life.
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16.02.2017