For over a year, Doctors Without Borders/Médecins Sans Frontières (MSF) teams in Lebanon have been treating Syrian refugee children for thalassemia. A genetic blood disorder, in its acute forms thalassemia requires intensive treatment that MSF provides in a pediatric hospital in the city of Zahle in the Bekaa Valley.
Thalassemia is caused by an alteration in the genes required to synthesize hemoglobin. The greater the number of altered genes, the more severe the disease. Thalassemia is more common in the Middle East, Asia, Africa, and across the Mediterranean region. Patients left untreated can have considerably shorter life expectancy.
In severe cases, regular blood transfusions are needed to compensate for the lack of hemoglobin. “But there’s a complication with frequent transfusions,” says Dr. Amber Alayyan, medical manager of MSF programs in Lebanon. “These can cause iron overload, which can result in heart or liver disease. This is why thalassemia patients need iron chelators to lower iron levels in the body.”
MSF provides comprehensive care for children suffering from thalassemia in the pediatric department of Elias Haraoui hospital, starting with diagnosis. Because the disease is hereditary, parents are often aware their children are affected, so it just takes a blood test to confirm the diagnosis. In other cases, when a child is pale, weak, and shows signs of anemia, blood tests are carried out to establish the cause, and hemoglobin electrophoresis confirms whether or not it is thalassemia.
In addition to blood transfusions, Syrian children treated at Elias Haraoui hospital receive appropriate medications including Deferasirox, which is prescribed as a first-line drug. The MSF team takes blood samples to monitor the children’s treatment and also keeps a watchful eye on their general state of health. If any other health issues are identified, they are referred to the appropriate specialist. We also educate parents about the treatment that’s been prescribed and explain that, once the disease is under control, children can lead normal lives.
“It’s really important for the team to have a relationship with the families,” says Fousia Bara, MSF head of mission in Lebanon. “Some parents are distressed because they think their child won’t be able to get married and will have no future. We reassure them and tell them that their child can live with the illness, which gives them hope.”
MSF is currently treating 64 patients for thalassemia in the hospital in Zahle, all of them Syrian children who cannot access care from the United Nations refugee agency or Lebanon’s public program. We plan to scale up our activities to treat 100 Syrian children by the end of the year. The extremely high cost of the necessary drugs to treat thalassemia limits the number of patients who can be treated. With more than a million Syrians now living in Lebanon, there are likely many more refugee children suffering from the disease.