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Thalassemia is a disease caused by an alteration in the genes required to synthesise haemoglobin.
The greater the number of altered genes, the more severe the disease. The life expectancy of untreated patients can be considerably shortened. In severe cases, regular blood transfusions are needed to compensate for the lack of haemoglobin. “But there’s a complication with frequent transfusions”, says Dr 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.
MSF is currently treating 64 patients in the hospital in Zahle, all of them Syrian children. They have access neither to the state-provided care programme, which is exclusively for Lebanese nationals, nor to coverage by the United Nations Refugee Agency (UNHCR). MSF plans to scale-up its activities and treat 100 Syrian children by the end of the year. The organisation can’t take on any more due to the extremely high cost of the drugs. However, with over one million Syrians now living in Lebanon, there are likely many more refugee children inflicted with thalassemia, because it is particularly prevalent in their home country. But, it would require being able to have access to a cheaper drug.
Thalassemia affects countries in the Middle East, such as Lebanon and Syria, and in the Mediterranean basin; the word thalassemia derives from the Greek thalassa that means sea. But, a relatively unknown disease, it is also prevalent in other countries like Pakistan and Afghanistan where access to treatment is impacted still further by instability and violence.
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