Sickle cell campaigners in Bahrain are planning to set up a national database that will include details of every person suffering from the disease in the kingdom.

The Bahrain Sickle Cell Anaemia Patient Care Society (BSCAPCS) told our sister publication the Gulf daily News (GDN) that there is no exact figure for the total number of people suffering from the inherited blood disorder, which it says hampers policymakers' efforts to improve health services.

The Health Ministry announced in February that around 5,000 people currently suffer from sickle cell anaemia, but according to the society that number was 18,000 only a few years ago.

"There is no exact figure on the total number of people suffering from sickle cell anaemia in Bahrain," said its society president Zakreya Al Kadhem. "This cannot be ignored as more than six patients on average have died every month since January."

Twenty sickle cell patients have died so far this year, putting it on course to be the deadliest year yet for the disease in Bahrain.

Bahraini Jassim Al Bader, 24, died last week at Salmaniya Medical Complex (SMC) because of complications associated with the disorder while two other patients - Wajeeha Al Jamri, 48, and Sayed Hussain - also died this month.

"If we continue like this we could see more than 70 deaths by the year-end, which will be the highest sickle cell death toll ever," said Mr Al Kadhem.

Thirty-two people died last year and 45 in 2012, prompting the society to push for better health services for patients.

The society has registered 280 deaths in the past few years.

"It is a matter of concern that we have all these deaths in Bahrain and there has been no proper investigation into why these men and women are dying," said Al Kadhem.

"This is one of the reasons we want to have a national database that will help policymakers to stop these deaths. We have noticed that if there is a death in a family because of the disease, a few years down the line another member from the same family dies because of similar complications."

He said a database would help researchers identify the underlying causes of the disease, adding that the society had discussed its ambitious plans with Health Minister Sadiq Al Shehabi and was trying to gain support from as many community leaders and non-governmental organisations as possible.

"We are talking about a large number of patients that need to be registered and that requires co-operation with different parties," Al Kadhem said. "It does not matter to us whether there are 18,000 patients or 5,000, all we want is better health services to improve their life expectancy."

Sufferers of sickle cell have abnormally shaped forms of haemoglobin, the protein in red blood cells that carries oxygen to the body's tissues.

The disorder decreases life expectancy and is known to increase the risk of various life-threatening complications.

The GDN reported in February that Bahrain had opened a Hereditary Blood Disorder Centre, which campaigners hope will improve sickle cell care.

The BD4.7 million ($1.24 million) facility at SMC is the largest of its kind in the region and has the capacity to treat more than 15,000 patients, including 5,000 sickle cell sufferers.

At the facility's opening, the Health Minister announced that the number of babies born with sickle cell disease had dropped to four per 1,000, down from a peak of 21 per 1,000 in the 1980s. – TradeArabia News Service