By Amina Nazarli
From 400,000 hemophiliacs worldwide, some 1,500 carriers of this terrible diagnosis are living in Azerbaijan.
The hereditary genetic disorders, in which the blood doesn't clot properly, and leading to excessive bleeding and hemorrhages, is a condition passed to a child by one or both of his or her parents.
Head of the Scientific-Practical Center of Hemophilia Elmira Gadimova said that the number of hemophiliacs, treated under stationary conditions, is decreasing in Azerbaijan, while the number of those receiving out-patient treatment or treatment at home is increasing.
From 1,500 hemophiliacs in Azerbaijan, 337 people or 22.5 percent are children are aged under 15.
“In 2008, for example, 980 patients receiving treatment on an outpatient basis and 577 in stationary. However, the number of outpatient reached 2,482 in 2015 and the number of stationary dropped up to 310. Currently, some 20 patients are treating in the center with severe inhibitory form of haemophilia,” she explained.
Last year, a total of 28 major surgical operations were carried out.
Only in 20 percent of countries hemophiliacs are provided with the necessary medicines by government, and Azerbaijan is among them.
Every year, this fatal disease takes the lives of hundreds of people around the globe. This rare disorder is an inherited genetic condition. This condition isn’t curable, but it can be treated to minimize symptoms and prevent future health complications.
“A defect in one of the genes that determines how the body makes blood clotting factor VIII or IX causes hemophilia. These genes are located on the X chromosomes. Repeated heavy bleeding can become a cause of disability of patients in childhood or adolescence, and sometimes lead to death. However, long-term experience shows that timely and quality treatment with antihemophilic drugs saves patients not only from death, but also from disability,” Gadimova said.
The primary prevention of children with severe hemophilia, preventing disability, improve quality of many children’s life, and they can live as normal people, according to the center’s head.
Chief hematologist of the Health Ministry Chingiz Asadov said that despite the treatment of hemophilia is expensive, all the needs of patients are paid by the state.
The Cabinet presented a state treatment program for people with hemophilia in 2006. As part of the “State Program on Hemophilia for 2011-2015” to improve health care in the country, the government created registries which reflect data on age, sex, type of disease, severity and number of persons who have received treatment.
"Prior to the adoption of the program the situation in this sphere has been abysmal. However, after adoption of the program the situation has improved significantly," Asadov said.
Expression of the disorder is much more common in males than in females
If a hemophiliac man marries a healthy woman, in this case, all the boys will be born healthy, and the girls will be "conductors", i.e. transmitters of disease.
A large number of patients with haemophilia in Azerbaijan are caused by spread of consanguinity (marriage to a blood relative) in some regions.
The overwhelming number of patients living in the southern parts of the country, in particular, Lankaran, Astara and Masalli, where the conclusion of consanguineous marriages is traditional, what results to birth of babies with hemophilia.
Gulnara Huseynova, Chairman of the Republican Association of Hemophiliacs, believes that Azerbaijan needs laboratory of molecular genetics to prevent the birth of children with this hereditary diseases.