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MOSCOW, November 17 (Itar-Tass) —— The medics and activists intend to draw attention to the problem of children and adults, who suffer from primary immunodeficiency, at the first congress of immunodeficient patients, which opened here on Thursday.
The primary immunodeficiency is a group of congenital diseases. About one person per 8,000-10,000 is a carrier of primary immunodeficiency at the genetic level.
The national Russian registry, which was created on the basis of the Russian Children’s Clinical Hospital in 2000, includes a little more than 700 patients, and the registry of the Immunology Institute has the same number of patients, “but this data was taken only from a third of Russian regions,” the activists affirm. The current real number of patients in Russia may reach 15,000 people. Any infection can be lethal for a person with this disease and the patients have some restrictions for vaccination. “Despite some improvement in the diagnostics in the regions in the last few years, children are frequently diagnosed incorrectly and many of them, particularly newborns with a heavy type of immunodeficiency, die at the age of 2-4 months,” the organizing committee of the congress said.
In the state medical and economic standards the term “primary immunodeficiency” spreads only on the category of children under 18. After coming of age these patients are excluded from the statistics and the treatment of their main disease is not financed. Some patients, which receive adequate therapy from childhood, have no clinical symptoms of disability that deprives them of social support from the state, despite the fact that immunodeficiency cannot be cured completely and the absence of therapy may lead to a real disability.
The participants in the congress find it necessary to create a national organization of patients in order to pool efforts of public organizations, medical community and legislative authorities.