Almost half of all people suffering from rare genetic disorders don’t know about their condition, according to an expert.

Such disorders can affect pregnancy, newborn infants and also lead to childhood deformities, cancer and death.

However, more than 40 per cent of sufferers around the world are completely unaware, Al Jawhara Centre for Molecular Medicine and Inherited Disorders assistant professor Dr Cristina Skrypnyk told the GDN.

She added the lack of a central database in Bahrain made it even more difficult to assess the extent of the problem.

“More than 40pc of rare genetic disorders are under-diagnosed globally, it could be the same here (in Bahrain) as well,” said Dr Skrypnyk.

“We don’t know about Bahrain as we don’t have a registry, nor a national plan, and we are not sure how many have rare diseases in Bahrain.

“We don’t have the rate of diagnosis, neither do we have any details on the kind of disorders diagnosed. Even among those diagnosed, we are not sure how many of them are correctly diagnosed or how many have initiated treatments. This is a big concern.”

She was speaking to the GDN yesterday on the sidelines of a seminar at the Arabian Gulf University’s centre in Zinj.

The event took place as part of an annual rare disease awareness campaign.

Dr Skrypnyk revealed genetic disorders were responsible for half of all childhood blindness, deafness and severe mental disability cases.

Meanwhile, 30pc of children admitted to hospital and almost 50pc of all child deaths are attributed to genetic conditions. Half of all miscarriages during the first trimester are blamed on chromosome abnormalities, while 10pc of common cancers – such as breast, colon and ovary cancer – have a strong genetic component.

The GDN reported in 2016 that an estimated 15 million people in the Arab world suffered from rare diseases, but a lack of data was hindering efforts to tackle the problem.

“Unfortunately we have not made any big progress on establishing a national registry,” said Dr Skrypnyk.

“We are trying and hoping to get to that point soon. “The awareness among healthcare workers in Bahrain on disorders is good, thanks to all the campaigns and the Health Ministry’s interest.

“But this is not something that can be done from a university, a genetic centre or by a group of people who want to bring change.

“This calls for a policy established at the national level.”

A regional study last year stated genetic disorders were the most common cause of infant mortality in the Arab world.

Dubai-based Health Magazine said 90pc of the Arab population were carriers of genetic disorders.

Dr Skrypnyk said she expected genetic disorders in Bahrain to exceed the international average.

“When we don’t have the statistics we don’t know the status, but we can assume it can be something similar and I think it is worse (in Bahrain),” she said.

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