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Thalassemia: The Syrian refugee children living with a rare blood disease
Thalassemia is a relatively unknown disease caused by an alteration in the genes required to synthesise haemoglobin.
The greater the number of altered genes, the more severe the disease, and the life expectancy of untreated patients can be considerably shortened.
This rare genetic disorder is particularly prevalent in the Mediterranean basin, including countries such as Syria and Lebanon. It’s also found elsewhere, in Pakistan and Afghanistan, where access to treatment is further limited by violence and instability.
In severe cases, regular blood transfusions are needed to compensate for the lack of haemoglobin.
“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”
“But there’s a complication with frequent transfusions”, says doctor Amber Alayyan, medical manager of MSF programmes 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.”
A hereditary condition
MSF provides comprehensive care in the paediatric department in Zahle’s Elias Haraoui hospital.
The team start by diagnosing the disease. Parents are often aware their children have the disease because it’s a hereditary disorder and other relatives 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 anaemia, blood tests are carried out to establish the cause. Haemoglobin electrophoresis then confirms whether or not it is thalassemia.
The Syrian children treated at Elias Haraoui hospital are given blood transfusions and the appropriate medication. Deferasirox, for example, is prescribed as a first-line drug.
The MSF team takes regular blood samples to monitor the children’s treatment and also keep a watchful eye on their general state of health. If any other health issues are identified, they are referred to the appropriate specialist.
The team also work to help parents understand the treatment, and, very importantly, 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 MSF’s country representative in Lebanon, Fouzia Bara.
“Some parents are distressed because they think their child won’t be able to get married and will have no future,” she continues.
“We reassure them and tell them that their child can live with the illness, which gives them hope.”
The cost of care
MSF is currently treating 64 patients in the hospital in Zahle, all of them Syrian children.
They have no access to the state-provided care programme, which is exclusively for Lebanese nationals, or to coverage by the United Nations Refugee Agency (UNHCR).
Although MSF is currently unable to take on any more patients due to the extremely high cost of the drugs, we plan to scale-up our activities to treat 100 Syrian children by the end of the year.
However, with over one million Syrians now living in Lebanon, there are likely many more refugee children inflicted with thalassemia. Sadly, to treat many more patients, it would require being able to have access to a cheaper drug.