ISTANBUL – Jana Alloush, 6, stutters when asked about her illness, which she cannot correctly pronounce. “Tlasimya,” she says, referring to a genetic disease that requires her to have blood transfusions every two to four weeks for the rest of her life.
She is one of 32 children being treated for thalassemia in the Houla Medical Center, a rebel-run field hospital, northwest of Homs, which has been starved of equipment and medical supplies since a brutal siege was launched on the Houla region in the Homs countryside a few years ago.
Syria Deeply spoke to thalassemia patients and medical staff in the field hospital, all of whom warned of a grave problem: With the absence of blood banks and proper medical equipment, children suffering from thalassemia in Houla are in danger of contracting blood-borne disease or even dying.
Thalassemia in Rebel-Held Syria
There are no recent statistics on the number of people in Syria currently suffering from the disorder, but the World Health Organization reported a total of 7,500 registered thalassemia patients in Syria in 2011. The Ministry of Health has also ranked blood disorders as the ninth most recurrent illness in the country.
There are dozens of thalassemia centers in government-held parts of Syria, and the country boasts a national blood bank that has received at least $5.1 million worth of WHO aid since the start of the war. This assistance has included specialized blood storage bags and blood testing kits, intended to keep the blood supply fresh and free of contamination from HIV, Hepatitis B and C, and other blood-borne diseases.
Rebel-held parts of Syria, however, are cut off from these facilities. This is the case in the rebel-held Houla region northwest of Homs, which has been under siege by government forces for years. The nearest thalassemia center is in the government-controlled Nuzha district in Homs city – only a 40-minute drive away. Patients and medical professionals, however, are denied access.
Children like Jana, who have been diagnosed with thalassemia in rebel-held Syria, have borne the brunt of this harsh reality.
“We do not have any specialized centers to treat thalassemia and there is no blood bank here,” Mohammad Alloush, Jana’s father, told Syria Deeply. “All we have is a modest, public field hospital that is, of course, not specialized in treating thalassemia.”
For him, this means that at least twice a month, he has to scavenge his district for a compatible donor for his daughter. Fortunately, he has always been able to find someone, though he says it’s very hard to come across a donor compatible with Jana’s blood type.
Haddar Da’as, whose 7-year-old son Mohammad was diagnosed with severe thalassemia six months after his birth, faces the same problem but says that he has not always been able to secure blood on time.
His son, a pale and fatigued young boy with yellowing in the white of his eyes, needs a new blood transfusion every 21 days. Because there is no blood bank in the area, Haddar says that there are often delays when it comes to securing a transfusion. He would sometimes have to wait up to a month before getting his blood replaced. But when more than three weeks pass without a transfusion, Haddar says that his son’s hemoglobin count falls to six grams per deciliter – less than half the normal rate.
“His life is being put at risk,” he says.
Securing compatible blood, however, is not the only problem. Once found, the blood needs to be tested and filtered before it can be administered to the patient. But in the Houla Media Center, these operations cannot be done easily.
Iyad Abu Sulaiman, who is responsible for testing blood in a laboratory in the facility, says that the siege has meant that only a limited number of tests can be done. The absence of proper testing raises the likelihood of thalassemia patients becoming infected with HIV, Hepatitis B and C and other blood-borne diseases.
“We do our best to help patients with the resources available to us,” he says.
According to Dr. Ismail, the Houla Medical Center has recorded a minimum of two deaths per year as a result of thalassemia since the start of the war. He says the absence of necessary medicine and equipment has made it a threatening disease for Houla’s residents.
Accumulating levels of iron in the body generated from hundreds of blood transfusions is the main factor of mortality in patients with thalassemia. Patients usually eliminate excess iron using a Desferal pump – an infuser that injects a purifying medicine into the body.
According to Dr. Ismail, these pumps are hard to come by in rebel-held areas. Without it, patients who undergo regular blood transfusion often experience critical organ and gland failure and serious iron-induced toxicity and early death.
“There is an urgent need for a blood bank … a laboratory and medical supplies,” he warns, expressing concern over the region’s capacity to treat new patients. He even goes as far as encouraging couples expecting children to genetically screen for thalassemia early on to avoid any more cases.