Nine percent of Egypt's population is affected by this rare disease
Egypt's health ministry has launched a campaign this month to raise awareness about thalassemia, a genetic blood disorder that affects almost 9 percent of Egypt's population, making it one of the most-afflicted countries in the world for the disease.
Working in cooperation with four other entities – the Egyptian Thalassemia Association (ETA), the hematology unit at Zagazig University's pediatric hospital, the pediatric-hematology unit at Cairo University and Novartis Pharma Egypt – the campaign also aimed to encourage people to donate blood to meet the dire needs of those who suffer chronically from the disease.
The campaign also included several activities to integrate patients with members of society. Volunteers passed out information on the disease, provided medical check-ups on patients, conducted pre-marital thalassemia carrier tests, gave awareness lectures and operated mobile blood-donation units to make it easier for others to give blood.
The response was remarkable –around 500 participated in the campaign, including thalassemia patients, their families and other volunteers.
Thalassemia is a genetic disorder that is passed from parents to their children. It is marked by a reduction in hemoglobin, thus the occurrence of severe anemia. The patient may later suffer from too much iron in the blood due to excessive blood transfusions.
A baby is born with the disease if both parents carry the gene. Blood transfusions should take place every three to four weeks from as early as six months into the child's life to compensate for the shortage of hemoglobin.
The disease causes the blood cells to break down and leave iron binding to vital organs like the heart and liver. Left untreated, these organs will not function properly, leading to fatal complications.
In Egypt, the iron-accumulation problem was tackled by giving shots to diagnosed children – an agonizing burden. Fortunately new oral medication was approved by the FDA that helps a child undergo blood transfusions without suffering the side effects of iron accumulation.
Still, the number of sufferers in Egypt is staggering – 7.65 million, according to Dr Leila Sherif, professor of hematology and pediatric oncology at Zagazig University.
She said that the number is so high, almost 9 percent of the population, that there must be immediate cooperation between the government and civil groups to curb an increase in the disease and also to raise awareness and integrate patients into society.
The two main risk factors are genetic and ethnic – having the gene in your family's history or being of Asian, African or Middle Eastern origin.
The symptoms of the disease include the development of severe anemia, deformities in facial structure and retarded bone-structure growth. They also include having a yellowish complexion, constant fatigue and shortness of breath.
Dr Osama El Safi, head of the hematology and pediatric oncology department, emphasised the importance of early detection and raising awareness of the importance of pre-marital blood testing, whether or not those getting married are related.
Dr Amal El Beshlawy, professor of haematology and paediatrics and ETA's chairman, elaborated on the point.
“The real problem is that for every 1.5 million children born in Egypt annually, almost 1,000 carry the disease due to a lack of awareness," El Beshlawy said.
El Beshlawy said that many countries have overcome the problem of the disease by ensuring that couples get tested for the gene before marriage, thus decreasing the number of cases annually.
An obvious example is Cyprus, where although 14 percent of the population carries the gene, only one child is born each year with the disease.
She stressed that this campaign is an essential step towards supporting those who live with the agony of thalassemia and helping to diminish the number of new borns with the gene by raising awareness.
By Ingy Deif