UAE doctor shares how awareness, premarital screening helped bring down thalassemia rates

Thalassemia rates in the UAE are down by more than 75 per cent in a span of two decades, thanks to the efforts a non-profit organisation.

The UAE Genetics Disease Association (UAEGDA), under the leadership of its founder Dr. Maryam Fatma Matar, has also been instrumental in increasing awareness about pre-marital screening for the genetic blood disorder among Emiratis. It also played a huge role in pushing for legislative changes in the country in this regard.

“The prevalence of the disease was 12 per cent in 2004,” said Dr Maryam.

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“Today it is 2.9 per cent. It is a great achievement for our NGO. We are the only organisation who are representing the Middle East in the Global Commission of Rare Diseases. We are the only organisation that has a partnership with Harvard Genetic institute since 2017.”

Speaking at the Future of Healthcare conference organised by Khaleej Times on Wednesday, Dr. Maryam said it was not an easy task.

How it started

Although the association was formed in 2004, Dr. Maryam had begun her work much earlier than that. She spoke of the difficulties she faced in convincing her fellow Emiratis to get themselves screened.

“In 2001, I went to the northern emirates, in particular to Ras Al Khaimah,” she said. “As you know we are still a tribe community, and it is controlled by tribe. I went in a helicopter on the top of one mountain to meet the tribe leader and I said, can I have a chat with you? So his wife came, and I started explaining to him. He was not convinced. He said, no, you will not screen the females. If you want, you can only screen the males in this tribe.”

Dr Maryam then explained how an idea struck her when she was served dates. “I asked him how many members are there in your tribe and he said there are more than 30,000,” she recalled.

“If you will not screen your tribe, then in less than 30 years you will have only 10 members of your tribe remaining because you will continue having unhealthy children and they will die early. He asked what he had to do.”

She then used the date parable to explain to him. “I asked him if you see the seed of the date, can you tell if it is Jabri or Khnaizi. He he said he can do so ,” she said. “I told him, that is exactly what we do. And if one tree in your farm was affected with any disease, what you will do? He said, he will cut it out, and throw it away. So I said, we are not asking you to kill your people; we are asking you to make sure to identify this illness early enough before it spread to the rest of the plant.”

Before leaving, Dr. Maryam and her team were able to screen 72 tribe members though the leader forbade them from publishing the results of the findings.

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