Krasnodar, 19 October – Yug Times. Krasnodar has reportedly played host to the first meeting of participants of the Patients’ School for primary immunodeficiency (PI) patients.
The project was initiated by the Sunflower Foundation, the first and only expert association in Russia that works with the problems and needs of PI patients. PI is not an infection; it is a genetic disease that deprives people of their own immunity. The treachery of the illness is that neither parents nor doctors can identify it at once: a series of sophisticated immunologic and genetic analyses are required to diagnosticate the disease.
According to immunologists, the number of PI patients in Russia may reach 15,000, though only 2,000 have been diagnosed officially. Most often, these are children deprived of any protection against trivial infections, which is why the human society is a source of deadly danger for them. Despite the fact that the situation with diagnostics in Russia has improved, sometimes the children are treated incorrectly, and many of them perish in early childhood.
“One of the aims of our program is to give the patients a chance to communicate and be a support for one another,” Aleksandr Runov, head of the Sunflower Patients’ School program, explained. “It’s an informal meeting to support the PI patients. Our experts - a doctor, a lawyer and a psychologist - answer most important questions, deliver short introductory lectures, and recount the rights of PI patients; they explain their relatives how to support them.”
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