International Thalassemia Day in Egypt: ThalaCinema Event to Spread Awareness of Blood Condition
Although it’s one of the most common and serious genetic diseases known to man, thalassemia isn’t often spoken about in mainstream media. With around 70,000 children born each year with the condition, the disease can have crippling effects on sufferers.
In joining forces for International Thalassemia Day, the Egyptian Thalassemia Association, Novartis and the Iron Health Alliance, there are hopes that increased awareness of this disease can increase in order to aid and help sufferers through a special event at El Sawy Culturewheel on Thursday 18 May.
Said event will feature screenings of two documentaries that follow the lives of two Egyptian thalassemia sufferers.
Produced by Novartis, the two films are part of Voices: Patient Stories – a series of documentary portraits collected worldwide through audio testimonies and art photographs that aim to shine a light on diseases like thalassemia, by portraying the human and medical challenges faced by its sufferers.
But what is thalassemia? In short, it’s a condition that means that the body has fewer red blood cells and less haemoglobin than it needs. The effects of the disease can vary, but some of the most common ones include bone deformity, delayed growth and development and chronic fatigue.
In Egypt, there are 10,000 known thalassemia cases, in addition to an estimated 20,000 cases that are unregistered; severe cases require regular blood transfusions – which can often subsequently result in an unhealthy accumulation of iron in organs, which can in turn lead to the their dysfunction.
“It is critical to promote understanding of thalassemia to ensure that children and adults are receiving appropriate care and support,” says Manal Shoukry, one of the two subjects of the documentaries, “I now volunteer with the Egyptian Red Crescent to inform patients and their families on thalassemia – with treatment, these children can pursue fulfilling lives.”
The term raising awareness is used a lot with vague parameters. But as Heba Ibrahim, the other subject of the documentaries, has learned, it’s just as effective a method on a personal level.
“Growing up I’ve learned a lot through other patients, so I believe an information exchange platform is needed.”
The screenings will take place at El Sawy Culturewheel on Thursday 18 May at 7PM and will be followed by a session led by Life Saving Team to introduce and explain thalassemia in more detail. For more information, click here.