Looking at beautiful and smart Olesya, no one would wish either to question her, or to tell you what horrors and pains did the girl’s mother endure in the last 14 years – her daughter is suffering from a dangerous disease called hereditary angioedema. The disease was properly diagnosed only in March of this year, and before that, with acute and severe edemas, Olesya was regularly taken to municipal hospitals, where she underwent several surgeries which she actually didn’t need if an adequate therapy would have been applied. The girl’s grandmother died of the same kind of edema, when an ambulance didn’t arrive in time. The girl’s father is also suffering from the same edemas, but in a milder form. For Olesya to be out of danger, it is necessary for her always to keep Icatibant at hand. One to three shots of the drug make an edema subside. If it’s a larynx edema, every single minute is crucial. In a clinic which was supposed to give out the life-saving drug, bureaucratic obstacles haven’t being overcome yet, although more than 2 months have passed. On May 15, it was again told that if a council of physicians confirms the prescription given by the Moscow’s chief immunologist, maybe the drug will be provided, but not earlier than within 45 days. But the girl’s body doesn’t forewarn when the next acute exacerbation of the disease might happen.
The Ministry of Health of the Russian Federation officially recognized hereditary angioedema as one of the rare life-threatening and life-shortening diseases. 575,000 rubles are needed to insure the girl’s life by purchasing 5 doses of Icatibant.
Hereditary angioedema (HAE) is a rare type of primary immunodeficiency, related to both low and high levels of the C1 esterase inhibitor, a protein of the complement system, or its malfunction, leading to uncontrolled internal reactions in the blood and causing episodic attacks of swelling, most often affecting the hands, legs, face, and abdominal cavity. A larynx edema is the most dangerous manifestation of the disease which can lead to suffocation.