On 8 May each year, the world recognises Thalassemia, shedding more light on the battle those living with the condition endure and raising awareness on the possibility of decreasing the number of carriers through various means.
This year, marking this occasion took a different turn.
On 18 May, the Egyptian Thalassemia Association (ETA) collaborated with NGO Resala's Saving Lives Team, El-Sawy Cultural Wheel and the private sector's Novartis Pharma to tell the brave and heroic stories of people living with the condition through the eyes of two women.
The honesty of the turmoil in the stories of Heba Ibrahim and Manal Shoukry grabbed the attention of the audience.
“I’m 26 years old, and was diagnosed with Thalassemia when I was only one-year-old. As a child, it was not easy being sick and getting treatment. But if anything, I believe it helped build my character,” said Heba Ibrahim.
Heba said how she learned a lot from other patients as she grew up, and this enforced her firm belief in the power of exchanging information and social support.
As for Manal Shoukry, she stressed that it is critical to promote understanding of Thalassemia to ensure that children and adults receive appropriate care and support.
"I now volunteer with the Egyptian Red Crescent to inform patients and their families about Thalassemia - with treatment, these children can pursue fulfilling lives,” she said.
The documentary ‘Voices, Stories of Patients: Transfusion-dependent Thalassemia (TDT)’ is part of a global patient-oriented program designed to raise awareness of transfusion-dependent Thalassemia by portraying daily life and the human and medical challenges.
Almost 30,000 patients with Thalassemia are registered in Egypt, according to the ETA.
The main purpose of the documentary year was not only to give hope to sufferers and show how life goes on, but also to seize the opportunity to push forward demands for stemming the problem of the increasing number of Thalassemia patients through enforcing a premarital check-up by law, shed light on breakthrough oral treatment, and highlighting further challenges
Dr Amal El-Beshlawy, professor of hematology and pediatrics and chairman of the ETA, sheds more light on Thalassemia.
“It is a genetic disorder that is passed over from parents to their children. It significantly affects red blood cells, thus leading to severe anemia. Subsequently, the patient may suffer from excess iron in his blood due to excessive blood transfusions," she says.
"A baby is born with the disease if both parents carry the gene, and as early as six months, blood transfusions should take place every three to four weeks to compensate for the shortage of hemoglobin.
"The problem is that after a while the blood cells break down and leave iron binding to vital organs like the heart and the liver, which eventually affects the function of these organs if left untreated, causing fatal problems."
El-Beshlawy said that in Egypt, the iron accumulation problem had been tackled for years by giving the children shots, which was an agonising burden, but fortunately new oral medication has come to the scene, and now their daily intake can help the child take their blood transfusions without suffering the side effects of iron accumulation.
She further highlighted the success of models that put a national premarital plan into action, like in Greece and Cyprus. In Cyprus, where 14 percent of the population are carriers of the gene, only one child is born each year with the disease
On the other hand, 1,000 children in Egypt are born with the disease every year.