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Syria: The children living with a rare blood disease in a warzone
Médecins Sans Frontières/Doctors Without Borders (MSF) has started providing treatment to children with thalassemia in Tal Abyad national hospital, northeast Syria.
Thalassemia is an inherited blood disorder found across Syria and other parts of the Middle East. The condition causes the body to produce an abnormal protein in the blood which the immune system rejects, leading to anaemia.
People suffering from thalassemia require regular blood transfusions and chelation therapy – a treatment that removes excess iron from the blood – which can otherwise lead to organ failure.
"Because of the war, my daughter hasn’t received her treatment or blood transfusions for almost five months."
“Most of our patients are children aged between eight and 18. They need a blood transfusion every three to four weeks,” says Maartje Hoetjes, MSF medical emergency manager.
“The frequent blood transfusions can give patients complications, as blood contains iron that the body is not able to clear. As a result, patients develop iron overload, which damages their internal organs.
“Without removing the excess iron from the blood, patients will eventually die because of heart iron overload.”
Controlling thalassemia in a conflict zone
MSF is treating 400 patients with thalassemia in Tal Abyad national hospital.
The medical team closely monitors patients to pick up and treat severe infections early, provide nutritional supplements, vaccinations, health education, psychosocial support, safe blood transfusions and the recently started chelation therapy.
“Around 30-40 percent of our patients are internally displaced people and live in camps across northern Syria. The majority of children receiving treatment for thalassemia are also chronically malnourished,” says Hoetjes.
In northeast Syria, most of the thalassemia treatment centres closed due to the lack of specific medical equipment and the very limited number of specialist medical practitioners still in Syria.
Added to this, most health facilities were either damaged due to conflict or suffered as a result of the fragile healthcare system decimated by the war.
The war has forced families to take risks to access blood transfusions and treatment for their children.
“Due to the practice of unsafe blood transfusions, a high rate of the children we treat (up to 30 percent) are unfortunately infected with another bloodborne disease, most prominently hepatitis C,” Hoetjes explains.
“Every time we flee to a safe place, we try to find treatment centres”
Harfeyeh, a mother of a nine-year-old patient originally from Raqqa said: “We’ve been displaced seven times. Every time we flee to a safe place, we also try to find areas that have thalassemia treatment centres.
“Most of these centres are now closed. The closest location to us is Tal Abyad hospital, but it takes almost two and a half hours to get there by road.”
Jawhara, a mother of a 10-year-old girl said: “Because of the war, my daughter hasn’t received her treatment or blood transfusions for almost five months.
“We suffered a lot in Deir ez-Zour city. There weren’t enough units of blood. My daughter’s chronic disease was the main reason we left the city.”
MSF staff talk about saving lives in Syria on Everyday Emergency, the MSF podcast
Comfort and continuity
“Before the war, the Ministry of Health provided testing to couples before marriage to find out if they were both carriers of the thalassemia mutation, indicating a high chance of future children inheriting the disease. These measures are not being implemented anymore,” said Hoetjes.
“The number of patients we are treating is limited compared to the high number of people with thalassemia in the region, but we are hoping that this treatment will give some patients and their parents comfort and continuity, so they can focus on rebuilding their lives.”
Hoetjes added: “We hope that other medical organisations, donors and pharmaceutical companies step in to meet the gap in healthcare provision in Syria to ensure that civilians have adequate medical care and uninterrupted services.”
MSF in Syria
Across northern Syria, MSF runs or directly supports six hospitals and seven health centres, and operates six mobile clinic teams. We provide distance support to around 25 health facilities countrywide, in areas where teams cannot be permanently present.
Our activities in Syria do not include areas controlled by the government. Our requests for permission to work in government-controlled areas have to date not resulted in any access. To ensure independence from political pressures, we receive no government funding for our work in Syria.