Test schoolchildren for blood disorder to help eradicate condition in UAE, doctors say

Thalassaemia can cause anaemia, which could lead to organ damage, heart disease and even death, with the UAE having one of the highest rates of prevalence in the world.

Dr Essam Faraj Dohair, Thalassemia Centre Outreach Coordinator, centre, talks to a patient at Latifa hospital in Dubai. Pawan Singh / The National

DUBAI // Testing for thalassaemia, the genetic blood disease common in the UAE, should be carried out on schoolchildren and not just before marriage, a specialist says.

Earlier screening for the disease – which can cause anaemia leading to organ failure, heart disease and even death – would help to eradicate the condition in newborns.

Since 2006, screening for thalassaemia has been mandatory before a couple could be issued a marriage certificate.

“Here we have a misunderstanding of the words ‘premarital screening’,” said Dr Essam Dohair, the outreach coordinator at Dubai Thalassaemia Centre, which treats hundreds of patients a year.

“We have couples coming after they get involved, engaged and arranged and just before they get the official registration of the marriage because they are requested to do so by the court or the judge.”

But by this time it is too late to cancel as they have already made a commitment, and that could bring embarrassment to the families of the bride and groom, said Dr Dohair, 58, the first thalassaemia doctor in the Middle East.

“It is three, four, five days before the marriage party,” he said. “They have invited the people and they have spent the money. They are avoiding a mess as it will affect the reputation of the family or their pride.

“We need to tell people that premarital screening can be done at school age, before the boy and girl grow up to get married.”

Thalassaemia is a recessive genetic disease, which means both parents must carry the gene to pass it on.

Dr Dohair said if children were tested at school and found to be carriers, they could make an informed decision before entering a relationship with another carrier.

When that is the case, with each pregnancy there is a 25 per cent chance that a child would be born with the disease, a 50 per cent chance the child would be a carrier, and only a 25 per cent chance that the child would not be affected.

“If I have my children and I get them tested, then I can explain to him or her at 10, 12 or 16 that they are a carrier for thalassaemia and to be careful when they are planning to get engaged or married,” Dr Dohair said.

“You must ask before families arrange a meeting if their child has thalassaemia traits. We need to educate the children before they have any relation. It is the only way to reduce this problem.”

Dr Dohair, from Palestine, said that last year not one newborn in Dubai was found to have the disease, which he hailed as a massive achievement.

But this was not the case in other emirates and, although the number of cases has dramatically fallen in this country over the past few years, there is still much work to be done to eradicate the disorder, he said.

It is thought there are about 490 million thalassaemia carriers in the world. The UAE still has one of the highest thalassaemia rates in the world, with about 8.5 per cent of the population, expatriates and locals, being carriers of the disease.

Dr Dohair said the DTC treats about 850 patients a year, with at least 2,000 patients across the wider UAE seeking treatment.

Many people do not understand the difference between their children being a thalassaemia carrier or having the disease, he said.

“When you talk about a carrier there is no disease, there are no complications or symptoms, so no one is going to the doctor,” Dr Dohair said. “So there is a misunderstanding.

“If you want to know if your child is a carrier of the disease go and tell your doctor you want to do a specific blood test for it.”

It is also important to reach out to couples who were married before 2006, or who choose to wed despite positive screening results, he said.

Pre-implantation genetic diagnosis (PGD) allows doctors to identify embryos that carry common genetic disorders such as thalassaemia before they are implanted.

PGD can increase the chances of a successful pregnancy by helping to select the healthiest embryo.

Premarital screening has still not reached a satisfactory level, he said, adding education and awareness were key.

“Our awareness programme is still weak outside Dubai. We need to have no newborn cases born with thalassaemia.”