All of us, regardless of careers built and social status achieved, from the very start of our life are gifted with the most precious “start-up capital” needed to develop and prosper – a healthy immune system, letting us enjoy the surrounding world in all its entirety. And only a few of the healthy ones realize that not everyone was born with such a gift. The fearful diagnosis of primary immunodeficiency means a genetic error in the immune system. It practically takes the life of a little human being, destroying all the organism’s protective systems and turning any contact with the outside world into a source of a deadly danger.
Children suffering from primary immunodeficiency need support and therapy on a daily basis which requires the use of expensive medicines. Constant fundraising is the only way to provide the children with longevity and a normal quality of life.
WHEN A CHILD DIES BECAUSE MEDICINE COULDN’T HELP THEM, IT’S A TRAGEDY, WHICH WE HAVE TO ACCEPT AS INEVITABLE. BUT WHEN A CHILD DIES BECAUSE THERE WAS NO OPPORTUNITY TO PROVIDE THEM WITH THE PILLS THEY NEEDED – THIS IS A TRAGEDY WE ALLOWED TO HAPPEN.
Each contribution to the fund supporting children with dysimmunities is a prolongation of life. Their life. And ours too.
Primary Immunodeficiency (PID) consists of a number of genetic conditions that affect the efficient working of the body’s immune system. To date 200-250 specific conditions have been identified. Primary Immunodeficiency leaves the patient vulnerable not only to dangerous infections but also in certain diseases to inflammatory and malignant conditions. Babies born with the most severe types of PID would be expected to live a maximum of six months if left untreated or treated incorrectly.
Primary immunodeficiency is actually a name for a large group of serious genetically determined diseases which are caused by damage to one or several of the body's defence mechanisms. Currently, 250 kinds of such disorders are known. Approximately 1 out of 10,000 newborns has such an illness, but it’s possible that this ratio is 1:500 in reality.
There hsa been no acknowledgement of the illness by the state and a low awareness of the disease among doctors has esulted in little more than 1,500 individuals in Russia being officially diagnosed with primary immunodeficiency and getting adequate treatment.
According to leading Russian immunologists’ estimates, 90% of children with primary immunodeficiency in Russia die without ever being diagnosed.