(MENAFN - Khaleej Times) Drop in the number of disease cases attributed to awareness campaigns screenings.The number of cases of thalassaemia in newborns in Dubai has drastically reduced due to the rise in awareness levels and compulsory premarital screenings for couples. Dr Khawla Belhoul with patients at the Thalassaemia Centre.
“For the past three to four years the number of new cases of inherited blood disorder thalassaemia has reduced to zero to one case per year as opposed to 14 to 18 cases per year. This means the centre receives either no case or one new case per year” said Dr Khawla Belhoul Director of the Dubai Health Authority’s Thalassaemia Centre.
She attributed the drastic reduction in numbers to the extensive medical and educational awareness campaigns.
Dr Khawla also added the premarital screening has a strong impact reducing the incidence of the disease but the impact was not immediate. A premarital screening law for genetic diseases was introduced in 2006.
One in 12 people in the UAE carry the thalassaemia gene. Thalassemia is a recessive genetic disease meaning both parents must carry the gene to pass it along. When that is the case with each pregnancy there is a 25 per cent chance that a child will be born with the disease a 50 per cent chance the child will only be a carrier and a 25 per cent chance the child will not be affected.
Costs of treatment remain a burden on the patients and UAE healthcare system though government centres – which are already running in full capacity — offer the treatment free of cost that can vary depending on the age and complications with adult patients.
The only cure is bone marrow transplantation from a fully matched compatible donor which can cost more than Dh300000.
“Since 2007 we began exhaustive community outreach and awareness activities which has directly resulted in reducing the number of thalassaemia cases in the emirate.”
The Emirates Thalassemia Society said that when most to-be-married couples objected and said it was too late to call of the weddings the focus was shifted to educating students.
“We used to have issues when couples would be tested to see if they were a thalassemia carrier just a few days before the wedding” said Shakeela Basheer administration officer at the society. “And if they tested positive it would create complications for them so we shifted our focus to educating students and this has definitely helped” added Shakeela who is also a patient.
Shakeela was last year awarded by the Shaikh Sultan bin Khalifa International Thalassemia Award for being the most ideal patient and inspiring others.
Last year 54 schools two universities and 11 government departments visited the thalassemia centre as part of the awareness campaigns. “Each year students from class 9 to 12 visit the centre and are educated about the disease. Reaching out to them to understand the disease and its life-time complications has greatly helped curb the rise in number of new cases” explained Dr Khawla.
She said students opt to get themselves tested to understand whether they are a carrier or not and this is important to do early on in life so that they can take future decisions carefully.
“Our message is clear — it is inadvisable for both partners with thalassaemia to get married because there are strong chances that all babies born to that couple will carry the disease and we see several such cases. However if only one person has thalassaemia it is still okay because the baby will be a carrier but will not have thalassaemia.”
The centre has 1660 out-patients who do not require blood transfusions and 438 in-patients who require blood transfusions every two to three weeks. In 2013 8114 patient visits were recorded by the centre.
Seventy per cent of the patients at the centre are adults and 30 per cent are children.