Institute for War and Peace Reporting | Giving Voice, Driving Change
Curse of Thalassemia Strikes Azerbaijan
For Hajar Zulfugarova, blood is the most precious commodity in her life. Finding some for her sick child takes up all of the family's money and energy - but 16-year-old Rufat needs constant transfusions if he is to survive.
Rufat, Hajar's middle child, suffers from the genetic disease thalassemia, which is rare across the world but widespread in Azerbaijan. Every month, parents such as the Zulfugarovas bring their children to the capital, Baku, in the hope of prolonging their lives.
A transfusion will give new strength for up to 30 days, before fresh blood is needed again. They are doomed to go through this procedure every month, year in and year out, for the rest of their lives.
Thalassemia is a hereditary blood disease caused by an excess of haemoglobin, which kills red blood cells. The disease occurs most frequently in the Mediterranean - specifically Italy, Cyprus, and Turkey, as well as in the Middle East and North Africa.
It's unclear why thalassemia - named after the Greek words for sea and blood - is common in these particular countries. Some medical analysts believe it is the consequence of a malaria epidemic in the region several centuries ago, which caused certain genes to mutate in an effort to increase resistance to the disease.
But other doctors blame inbreeding - a popular practice in the Mediterranean - for the genetic aspect of the disease.
With more than 3,000 people affected nationwide - only five per cent of whom are adults - Azerbaijan is considered a thalassemia hot spot.
Every year, as many as 500 children are born here with hereditary thalassemia. They are distinctive in appearance - dull of skin, with a flat nose, narrow eyes and an unusually large head and stomach. Their lives are also similar - short and tragic.
The Savab Duniasy (World of Bliss) association at Baku's Institute of Haematology - whose president Nazim Zalyev is the parent of a sufferer - has some 500 young thalassemia patients on its books.
The parents have banded together to tackle the challenges they face - mainly a catastrophic shortage of donor blood. "Our children need transfusions most of all," Zalyev told IWPR. "There's never enough blood to go round."
Donors are few and far between these days, and parents are often forced to buy blood at very high prices. Donors receive around eight dollars for every 400 grams of blood they give. The same amount is then sold to patients for almost twenty dollars.
The filters required to prepare the blood for transfusion also mount up to a massive expense, although Rafiga Sadykhova, wife of Azerbaijan''s ambassador to Germany and co-chair of the Azerbaijani Women's Union, has been aiding the organisation in this.
Every morning, the parents of thalassemia patients come to the haematology institute, desperate for blood. Each of them hopes that today will be the lucky day when someone will donate a quantity of blood to suit their child's group.
If not, many simply wait and beg, while others place advertisements on the radio, urging people to donate blood - to little effect.
And when transfusions no longer bring relief, the child's spleen has to be surgically removed - but this is only a deferral, not a cure.
Sona Akhmedova, a five-year-old girl from the Kurdamir region, had her spleen removed this year. She feels better now, and needs transfusions less often. But her parents fear this temporary spell of well-being may end soon - and then there will be no other remedy left. All of their family savings have been spent on Sona's treatment.
Increasingly, thalassemia experts are thinking about prevention, not cure. According to Asya Mamadova, who is in charge of the haematology department of the Republic Clinical Hospital in Baku, the best method is to convince young people to take a thalassemia gene test before they get married. This is the only way to curb the disease in the long run. When both parents have the dangerous gene, the risk is very high that their child will be born with the sickness.
In Italy, Cyprus and other countries with a high incidence of the disease, thalassemia testing is a common practice and the results are very encouraging. Thanks to mandatory genetic compatibility testing for newlyweds, the condition is now fully under control in northern Cyprus, where only five babies were born with the condition between 1990 and 1995 - and none at all since then.
Theoretically, thalassemia can be cured through a marrow transplant, but until very recently, this kind of surgery was unavailable in Azerbaijan. But the Central Clinical Hospital now has the supplies and equipment to perform the delicate operation, and soon Azerbaijani children will have domestic access to the only operation that can save them.
However, a marrow transplant costs a fortune and incomes are extremely low in the rural areas of southern Azerbaijan, which are hit the hardest by thalassemia. It is, therefore, unlikely, that the disease will be curbed here in foreseeable future.
Nigar Musaeva is a student at Baku's Slavic University.
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