DUBAI// A documentary about Emiratis living with thalassaemia is set to begin shooting at the end of the month.
The film, Ismi [My name is), will depict a day in the life of seven people suffering from the hereditary blood disorder.
"I want all seven to be Emirati," said Wassim Beydoun, the director and writer of the project. "The film will be in Arabic.
''We are hoping to be completed in time for the Thalassaemia International Federation World Congress that will take place in Abu Dhabi this year."
The event will be held from October 20 to 23.
Dubai Health Authority's Thalassaemia Centre has estimated that one in 12 people in the Emirates are carriers of the disorder. But most are unaware of the problem, so the centre advises screening. Severe cases require patients to have regular blood transfusions.
"We want people to know what it's like to live with this disease," Beydoun said.
He got the idea for the film two years ago when a friend mentioned thalassaemia to him.
"I immediately began researching, I had to know all I could," he said. "I was surprised to find there was very little information about thalassaemia online compared to other diseases like diabetes, and what there was seemed out of date.
"So I sent pages of questions to my uncle who is a pathologist in the US."
The film aims to capture how thalassaemia affects the lives of sufferers, including their families.
"That is the hard part, we don't just want to cast the patients - we have to get permission to film their whole family and get their view on the disease.
"I want to get two children, two young adults, two adults and a survivor who is in his late 50s," Beydoun said.
Mouna Haraoui, the former first lady of Lebanon, has already given her support to the project and will appear in the film.
"Mrs Haraoui has been like a mentor to me throughout this project, I've treasured all the knowledge she has given us," Beydoun said.
Mrs Haraoui is the founder and president of the Chronic Care Centre in Lebanon, which treats diseases such as thalassaemia and insulin-dependent diabetes.
Thalassaemia is an inherited haematological disorder. Sufferers make less haemoglobin and fewer circulating red blood cells, which results in anaemia.
"Any initiative that increases awareness about thalassaemia is something we need," said Dr Essam Dohair, haematologist and coordinator at Dubai's Thalassaemia Centre.
"We have carriers walking around who don't know they carry the disease and could pass it to their children.
"Thalassaemia is diagnosed early in life and requires blood transfusions every three weeks for the rest of the patient's life."
Some treatment sessions can take up to 12 hours.
"We have 850 patients who receive care at the centre, 450 of whom require continuous treatment," Dr Dohair said. "This disease is prevalent in the UAE but we lack proper statistics."
Thalassaemia patients can suffer a number of complications, said Dr Dohair, such as an overload of iron, either from the disease or from frequent blood transfusions.
Too much iron can damage the heart, liver and endocrine system.
Without proper treatment, almost all patients will accumulate potentially fatal iron levels.
"You need fresh blood, less than five days old, for the transfusions, which require constant supply," Dr Dohair said. "We were very proud when Sheikh Mohammed [bin Rashid, Vice President and Ruler of Dubai] came to donate blood as an inspiration to everyone to help out."
Thalassaemia patients are susceptible to infections, and the disease can also make bone marrow expand, which can result in abnormal bone structure, especially in a patient's face and skull.
This also makes bones thin and brittle, increasing the risk of fractures.
Puberty may also be delayed in children with thalassaemia, and anaemia can cause a child's growth to slow.
"There are great efforts by the government to combat this disease but the problem is still there, we are still seeing new cases even with mandatory blood screening before marriage being implemented in 2006," Dr Dohair said.
To be ready for the Thalassaemia Congress, Beydoun must start filming by August 25.
"If we don't start shooting by then, it just won't happen. I need to have the first edit done by the first week of October," he said.
All proceeds from the documentary and related events will be donated to the Emirates Thalassaemia Society.
