The number of cases of the inherited blood disorder thalassaemia in newborns has almost halved.
Doctors attribute the fall to a far-reaching six-year medical and educational campaign, called UAE Free of Thalassaemia and launched in 2005, to reduce the number of newborn incidents to zero.
The campaign involved lectures, counselling and stringent screening.
Since the opening in 1995 of Dubai Thalassaemia Centre, at Latifa Hospital, formerly Al Wasl Hospital, 1,000 patients have been registered, an average of about 59 cases a year.
Between 2005 and 2011, however, 217 cases were registered, an average of 31 new cases a year.
Of the 217 cases registered in the past seven years, 139 patients (64 per cent) were UAE nationals, and 167 patients (114 Emiratis and 53 non-nationals) had the condition diagnosed before the age of 6. There were also 34 cases of pre-natal diagnosis.
Dr Erol Baysal, director of the UAE Genetic Diseases Association, said the 1,000 registered patients were not an accurate reflection of the prevalence of the disease.
"We estimate that this number could in fact reach 2,000 or 3,000," he said. "And there are plans to open dedicated thalassaemia centres in Abu Dhabi, Sharjah and Ras Al Khaimah in addition to the centre established in Fujairah last year."
As part of the campaign, all new students at Dubai Women's College have been screened and advised of their haemoglobin levels, which are affected by thalassaemia. The college has its own thalassaemia laboratory at its Wellness Centre.
Similar programmes were introduced at universities across the country, including those affiliated with the Higher Colleges of Technology.
"We didn't just look at Dubai, but we involved communities across all other six emirates," Dr Baysal said. "You can see the results in the decision these students are making when they decide to have a family."
There are two types of thalassaemia: alpha and beta.
Alpha thalassaemia involves four genes. Patients who have a single or double-gene mutation usually do not experience any symptoms, said Dr Fatheya Al Khaja, a thalassaemia specialist at the centre.
Those with three-gene mutations may require blood transfusions, and those with mutations of all four genes generally do not survive.
"These children are not compatible with life and will most likely die in-utero. However, we rarely see such cases here," Dr Al Khaja said.
Alpha thalassaemia affects nearly 50 per cent of the Emirati population, although a majority are only carriers.
Beta thalassaemia, which involves two genes, is more prevalent in the UAE than in other countries.
It affects nearly 8 per cent of the population, compared with between 2 and 5 per cent in Greece, Turkey and Italy - countries known for high rates of thalassaemia.
If only one gene is defective, then the individual is a carrier and will not experience symptoms. However, if two genes are mutated, patients will require blood transfusions for the rest of their lives.
"This is why we place so much emphasis on the tests," Dr Al Khaja said. "Because so many people may be carriers of the disease but do not know it."
A premarital screening law for genetic diseases was introduced in 2006. However, Dr Al Khaja has been encouraging couples who were married before 2006 to be screened as well.
Thalassaemia 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.
Newborns are screened for the disease using a heel-prick test as part of the national screening programme.
Patients who require blood transfusion are said to have thalassaemia major. They require transfusions every three to four weeks to replenish their haemoglobin levels. The procedure, however, causes elevated iron levels in the blood.
The traditional way to reduce blood-iron is by injecting a patient with disferal, a medication that removes iron from the blood. The medicine is administered by pump, and patients must be medicated for at least eight hours a day.
"It's a very cumbersome, inconvenient procedure for these patients," Dr Baysal said, and they are often children. "It's a painful exercise."
A new tablet called Exjade was introduced five years ago and can replace this therapy with a daily dose. Those who have severe heart problems, however, may not benefit from the tablet.
Dr Al Khaja said a bone-marrow transplant is a possible cure for thalassaemia. But this treatment is "not available locally, expensive, requires a matched donor, and comes with its own set of complications". Such a procedure costs approximately $1 million (Dh3.7m).
Another option is a cord blood stem-cell transplant. Although the Dubai Cord Blood and Research Centre can isolate the stem cells, patients must travel abroad for the procedure, which costs more than $100,000.
While the decrease in incidence is promising, Dr Al Khaja said there is still room for improvement.
"We are still seeing a number of patients from outside Dubai, particularly from the Northern Emirates," she said. "We still need more elaborate campaigns that target those areas."
mismail@thenational.ae
The years Ramadan fell in May
Turning%20waste%20into%20fuel
%3Cp%3EAverage%20amount%20of%20biofuel%20produced%20at%20DIC%20factory%20every%20month%3A%20%3Cstrong%3EApproximately%20106%2C000%20litres%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3EAmount%20of%20biofuel%20produced%20from%201%20litre%20of%20used%20cooking%20oil%3A%20%3Cstrong%3E920ml%20(92%25)%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3ETime%20required%20for%20one%20full%20cycle%20of%20production%20from%20used%20cooking%20oil%20to%20biofuel%3A%20%3Cstrong%3EOne%20day%3C%2Fstrong%3E%3C%2Fp%3E%0A%3Cp%3EEnergy%20requirements%20for%20one%20cycle%20of%20production%20from%201%2C000%20litres%20of%20used%20cooking%20oil%3A%3Cbr%3E%3Cstrong%3E%E2%96%AA%20Electricity%20-%201.1904%20units%3Cbr%3E%E2%96%AA%20Water-%2031%20litres%3Cbr%3E%E2%96%AA%20Diesel%20%E2%80%93%2026.275%20litres%3C%2Fstrong%3E%3C%2Fp%3E%0A
UK%20record%20temperature
%3Cp%3E38.7C%20(101.7F)%20set%20in%20Cambridge%20in%202019%3C%2Fp%3E%0A
NO OTHER LAND
Director: Basel Adra, Yuval Abraham, Rachel Szor, Hamdan Ballal
Stars: Basel Adra, Yuval Abraham
Rating: 3.5/5
Volunteers offer workers a lifeline
Community volunteers have swung into action delivering food packages and toiletries to the men.
When provisions are distributed, the men line up in long queues for packets of rice, flour, sugar, salt, pulses, milk, biscuits, shaving kits, soap and telecom cards.
Volunteers from St Mary’s Catholic Church said some workers came to the church to pray for their families and ask for assistance.
Boxes packed with essential food items were distributed to workers in the Dubai Investments Park and Ras Al Khaimah camps last week. Workers at the Sonapur camp asked for Dh1,600 towards their gas bill.
“Especially in this year of tolerance we consider ourselves privileged to be able to lend a helping hand to our needy brothers in the Actco camp," Father Lennie Connully, parish priest of St Mary’s.
Workers spoke of their helplessness, seeing children’s marriages cancelled because of lack of money going home. Others told of their misery of being unable to return home when a parent died.
“More than daily food, they are worried about not sending money home for their family,” said Kusum Dutta, a volunteer who works with the Indian consulate.
The Lowdown
Us
Director: Jordan Peele
Starring: Lupita Nyong'o, Winston Duke, Shahadi Wright Joseqph, Evan Alex and Elisabeth Moss
Rating: 4/5
The Brutalist
Director: Brady Corbet
Stars: Adrien Brody, Felicity Jones, Guy Pearce, Joe Alwyn
Rating: 3.5/5
TRAP
Starring: Josh Hartnett, Saleka Shyamalan, Ariel Donaghue
Director: M Night Shyamalan
Rating: 3/5
The%20Color%20Purple
%3Cp%3E%3Cstrong%3EDirector%3A%20%3C%2Fstrong%3EBlitz%20Bazawule%3Cbr%3E%3Cstrong%3EStarring%3A%20%3C%2Fstrong%3EFantasia%20Barrino%2C%20Taraji%20P%20Henson%2C%20Danielle%20Brooks%2C%20Colman%20Domingo%3Cbr%3E%3Cstrong%3ERating%3A%3C%2Fstrong%3E%204%2F5%3C%2Fp%3E%0A
ARGYLLE
%3Cp%3EDirector%3A%20Matthew%20Vaughn%3C%2Fp%3E%0A%3Cp%3EStarring%3A%20Bryce%20Dallas%20Howard%2C%20Sam%20Rockwell%2C%20John%20Cena%3C%2Fp%3E%0A%3Cp%3ERating%3A%203%2F5%3C%2Fp%3E%0A
The biog
Name: Ayisha Abdulrahman Gareb
Age: 57
From: Kalba
Occupation: Mukrema, though she washes bodies without charge
Favourite things to do: Visiting patients at the hospital and give them the support they need.
Role model: Sheikha Fatima bint Mubarak, Chairwoman of the General Women's Union, Supreme Chairwoman of the Family Development Foundation and President of the Supreme Council for Motherhood and Childhood.
Milestones on the road to union
1970
October 26: Bahrain withdraws from a proposal to create a federation of nine with the seven Trucial States and Qatar.
December: Ahmed Al Suwaidi visits New York to discuss potential UN membership.
1971
March 1: Alex Douglas Hume, Conservative foreign secretary confirms that Britain will leave the Gulf and “strongly supports” the creation of a Union of Arab Emirates.
July 12: Historic meeting at which Sheikh Zayed and Sheikh Rashid make a binding agreement to create what will become the UAE.
July 18: It is announced that the UAE will be formed from six emirates, with a proposed constitution signed. RAK is not yet part of the agreement.
August 6: The fifth anniversary of Sheikh Zayed becoming Ruler of Abu Dhabi, with official celebrations deferred until later in the year.
August 15: Bahrain becomes independent.
September 3: Qatar becomes independent.
November 23-25: Meeting with Sheikh Zayed and Sheikh Rashid and senior British officials to fix December 2 as date of creation of the UAE.
November 29: At 5.30pm Iranian forces seize the Greater and Lesser Tunbs by force.
November 30: Despite a power sharing agreement, Tehran takes full control of Abu Musa.
November 31: UK officials visit all six participating Emirates to formally end the Trucial States treaties
December 2: 11am, Dubai. New Supreme Council formally elects Sheikh Zayed as President. Treaty of Friendship signed with the UK. 11.30am. Flag raising ceremony at Union House and Al Manhal Palace in Abu Dhabi witnessed by Sheikh Khalifa, then Crown Prince of Abu Dhabi.
December 6: Arab League formally admits the UAE. The first British Ambassador presents his credentials to Sheikh Zayed.
December 9: UAE joins the United Nations.
The rules on fostering in the UAE
A foster couple or family must:
- be Muslim, Emirati and be residing in the UAE
- not be younger than 25 years old
- not have been convicted of offences or crimes involving moral turpitude
- be free of infectious diseases or psychological and mental disorders
- have the ability to support its members and the foster child financially
- undertake to treat and raise the child in a proper manner and take care of his or her health and well-being
- A single, divorced or widowed Muslim Emirati female, residing in the UAE may apply to foster a child if she is at least 30 years old and able to support the child financially
Tree of Hell
Starring: Raed Zeno, Hadi Awada, Dr Mohammad Abdalla
Director: Raed Zeno
Rating: 4/5
Film: Raid
Dir: Rajkumar Gupta
Starring: Ajay Devgn, Ileana D'cruz and Saurabh Shukla
Verdict: Three stars
Tuesday's fixtures
Kyrgyzstan v Qatar, 5.45pm
Thanksgiving meals to try
World Cut Steakhouse, Habtoor Palace Hotel, Dubai. On Thursday evening, head chef Diego Solis will be serving a high-end sounding four-course meal that features chestnut veloute with smoked duck breast, turkey roulade accompanied by winter vegetables and foie gras and pecan pie, cranberry compote and popcorn ice cream.
Jones the Grocer, various locations across the UAE. Jones’s take-home holiday menu delivers on the favourites: whole roast turkeys, an array of accompaniments (duck fat roast potatoes, sausages wrapped in beef bacon, honey-glazed parsnips and carrots) and more, as well as festive food platters, canapes and both apple and pumpkin pies.
Ruth’s Chris Steakhouse, The Address Hotel, Dubai. This New Orleans-style restaurant is keen to take the stress out of entertaining, so until December 25 you can order a full seasonal meal from its Takeaway Turkey Feast menu, which features turkey, homemade gravy and a selection of sides – think green beans with almond flakes, roasted Brussels sprouts, sweet potato casserole and bread stuffing – to pick up and eat at home.
The Mattar Farm Kitchen, Dubai. From now until Christmas, Hattem Mattar and his team will be producing game- changing smoked turkeys that you can enjoy at home over the festive period.
Nolu’s, The Galleria Mall, Maryah Island Abu Dhabi. With much of the menu focused on a California inspired “farm to table” approach (with Afghani influence), it only seems right that Nolu’s will be serving their take on the Thanksgiving spread, with a brunch at the Downtown location from 12pm to 4pm on Friday.
The%20specs
%3Cp%3E%3Cstrong%3EEngine%3A%20%3C%2Fstrong%3E2.0-litre%204-cyl%20turbo%3Cbr%3E%3Cstrong%3EPower%3A%20%3C%2Fstrong%3E190hp%20at%205%2C600rpm%3Cbr%3E%3Cstrong%3ETorque%3A%20%3C%2Fstrong%3E320Nm%20at%201%2C500-4%2C000rpm%3Cbr%3E%3Cstrong%3ETransmission%3A%20%3C%2Fstrong%3E7-speed%20dual-clutch%20auto%3Cbr%3E%3Cstrong%3EFuel%20consumption%3A%20%3C%2Fstrong%3E10.9L%2F100km%3Cbr%3E%3Cstrong%3EPrice%3A%20%3C%2Fstrong%3EFrom%20Dh119%2C900%3Cbr%3E%3Cstrong%3EOn%20sale%3A%20%3C%2Fstrong%3ENow%3C%2Fp%3E%0A
In numbers: PKK’s money network in Europe
Germany: PKK collectors typically bring in $18 million in cash a year – amount has trebled since 2010
Revolutionary tax: Investigators say about $2 million a year raised from ‘tax collection’ around Marseille
Extortion: Gunman convicted in 2023 of demanding $10,000 from Kurdish businessman in Stockholm
Drug trade: PKK income claimed by Turkish anti-drugs force in 2024 to be as high as $500 million a year
Denmark: PKK one of two terrorist groups along with Iranian separatists ASMLA to raise “two-digit million amounts”
Contributions: Hundreds of euros expected from typical Kurdish families and thousands from business owners
TV channel: Kurdish Roj TV accounts frozen and went bankrupt after Denmark fined it more than $1 million over PKK links in 2013
The specs: 2018 Nissan Altima
Price, base / as tested: Dh78,000 / Dh97,650
Engine: 2.5-litre in-line four-cylinder
Power: 182hp @ 6,000rpm
Torque: 244Nm @ 4,000rpm
Transmission: Continuously variable tranmission
Fuel consumption, combined: 7.6L / 100km
More from Neighbourhood Watch:
More coverage from the Future Forum
The specs
Engine: 2.9-litre, V6 twin-turbo
Transmission: seven-speed PDK dual clutch automatic
Power: 375bhp
Torque: 520Nm
Price: Dh332,800
On sale: now
