"My dream is that one day people won't suffer what I have suffered for a lifetime." Her voice was low and her demeanour calm, but the girl with the fair complexion, Alaa Abdallah, captured the attention of everyone in the audience.
Alaa, a Syrian medical student, was the guest of honour at a conference to launch a campaign aiming to encourage blood donations aimed at meeting the ever-increasing needs of thalassemia patients.
Thalassemia is a disease that is transmitted through inherited genes, reducing the production of red blood cells in the body and thus reducing hemoglobin. First, the person suffers anemia. But moreover, because the function of hemoglobin is carrying oxygen to organs of the body, a reduction in hemoglobin will be reflected in these organs and the way they function.
The girl courageously recounted the story of her life since childhood with the disease and the pain. Her parents discovered her illness and began the agonising journey of continuous blood transfusions, shots and medications that she expects will last for lifetime.
The conference coincided with World Thalassemia Day on 8 May with the collaboration of several entities, including Ain Shams University, Cairo University, the Health Insurance Authority and the Egyptian Thalassemia Association (ETA).
Professor of haematology and paediatrics and chairman of the ETA Dr Amal El-Beshlawy underlined the alarming numbers and statistics.
"The percentage of carriers of thalassemia in Egypt is huge, reaching up to nine percent. But the real problem is that for every 1.5 million children born in Egypt annually, almost 1000 carry the disease due to lack of awareness [of the disease]."
Other countries have overcome the problem by ensuring that couples get tested for the gene before marriage, thus decreasing the number of cases. An obvious example is Cyprus, where although 14 percent are carriers of the gene, only one child is born each year with the disease.
Professor of haematology and paediatrics at Ain Shams University, Dr Mohsen El Alfy, shed some light on thalassemia. A baby is born with the disease if both parents carry the gene. Blood transfusions should start as early as six months of age, every three to four weeks to compensate for the lost haemoglobin.
However, blood transfusions cause another problem. After a while, blood cells break down and leave iron to bind on vital organs, like the heart and the liver. If left untreated, this eventually affects the function of these organs, causing fatal problems.
Dr El-Alfy explained that in the past the iron accumulation problem was tackled by giving the children shots, which was an agonising burden. Fortunately, however, the first oral medication was approved by the US Federal Drug Administration (FDA) and now taking Deferasirox on a daily basis can address the side effects of iron accumulation.
In Egypt, the National Health Insurance Organisation (NHIO) made large strides towards improving treatment of the disease, offering patients approved medications and safe blood in various medical centres and hospitals all over the country. "Now Egypt is at the forefront of countries exerting efforts to fully meet the needs of thalassemia patients," says Dr Naglaa Shahin, official spokesperson of the NHIO.
Nonetheless, the challenges are still huge and the rates are still a big concern. Professor of paediatrics and haematology at Zagazig University, Dr Mohamed Badr, underlines the need for a national project that brings together the efforts of individuals, organisations and civil society to eradicate the disease and raise awareness on it.
The media also should take up its responsibility to bring the topic to the surface and make people aware of the importance of pre-marital tests and continuous blood donations to meet the vast number of patients all over the country, especially in rural areas, and specifically in the Nile Delta where the disease noticeably prevails, Badr says.
Financial donations can be directed to various entities related to the treatment of the disease, and to bank account numbers 602602 or 602600 in all branches of the National Bank of Egypt.
The panel told Ahram Online that the cost is a huge burden on the government budget, since medication for a single patient under the age of six is LE1500-2000 ($215-$285), and rises as the child gets older to LE2500-3500 ($360-$500) per month, which the government pays.
The need for blood donations was again underlined by a representative of Resala Charity, who said that in the first Thursday of every month the organisation donates blood to centres related to thalessemia treatment.
Resala, that launched the campaign under the title, "My blood can save a life," was first established in 1999 as a charity activity in the Faculty of Engineering at Cairo University, before it became one of the largest charity organisations in Egypt with more than 100,000 volunteers.
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