DUBAI // When Professor Zakiya Al Lamki's son was nine months old he began to cry and would not stop.
Speaking at Dubai's Orphan Diseases and Genetics in the Middle East conference, the paediatrician from Sultan Qaboos University Hospital in Oman yesterday recounted the experience of raising her son, Abdullah.
"He was crying, crying, crying … it was unbelievable. He was crying day and night continuously to the extent that the cries are still ringing in my head now," she said.
"At that time we moved to a new house, and friends and relatives felt that maybe the house was haunted and this infant was possessed by a djinn [demon]."
Eventually the family sought help at London's Great Ormond Street Hospital, where Professor Al Lamki had trained, and the condition was diagnosed as ornithine transcarbamylase deficiency.
The genetic disorder prevents the body from flushing ammonia, which then accumulates and causes serious problems such as encephalitis, an inflammation of the brain. But the condition is an "orphan disease" - one so rare that, in the past, drug companies were unwilling to take responsibility for developing treatments because there were not enough patients to justify the investment.
It is one of a range of genetic disorders that occur much more often in the Arabian Gulf region than in the rest of the world. Abdullah is now 30, a graduate in law from the UK's Warwick University who works for an oil company.
His condition is controlled by medication produced by Sobi, a Swedish pharmaceutical company that this week opened an office at the DuBiotech life sciences park in Dubai.
Sobi specialises in producing drugs to treat orphan diseases and pioneered the treatment of the genetic blood disorder thalassaemia.
Chief operating officer Alan Raffensperger said: "Our job here is to bring the products that mean the most to patients in the Middle East."
Dr Moeen Al Sayed, chairman of the department of medical genetics at the King Faisal Specialist Hospital in the Saudi capital, Riyadh, said: "Rare diseases are not so rare in this region. The most important reason for this is the excessive consanguinity that we have in the region.
"Related to this of course we have communities that have lived very much within their own domain, they have married within their own domain. This has made certain diseases in the region very prevalent."
He said the incidence of a range of genetic disorders known as inborn errors of metabolism diagnosed by newborn screening in Saudi Arabia was one in 900, and added: "This is one of the highest in the world."
Professor Al Lamki said: "The challenge we face is a lack of awareness generally. It's a new area, many doctors are not familiar. We, families and doctors, have to help each other to learn and to understand what is going on."
csimpson@thenational.ae
Key figures in the life of the fort
Sheikh Dhiyab bin Isa (ruled 1761-1793) Built Qasr Al Hosn as a watchtower to guard over the only freshwater well on Abu Dhabi island.
Sheikh Shakhbut bin Dhiyab (ruled 1793-1816) Expanded the tower into a small fort and transferred his ruling place of residence from Liwa Oasis to the fort on the island.
Sheikh Tahnoon bin Shakhbut (ruled 1818-1833) Expanded Qasr Al Hosn further as Abu Dhabi grew from a small village of palm huts to a town of more than 5,000 inhabitants.
Sheikh Khalifa bin Shakhbut (ruled 1833-1845) Repaired and fortified the fort.
Sheikh Saeed bin Tahnoon (ruled 1845-1855) Turned Qasr Al Hosn into a strong two-storied structure.
Sheikh Zayed bin Khalifa (ruled 1855-1909) Expanded Qasr Al Hosn further to reflect the emirate's increasing prominence.
Sheikh Shakhbut bin Sultan (ruled 1928-1966) Renovated and enlarged Qasr Al Hosn, adding a decorative arch and two new villas.
Sheikh Zayed bin Sultan (ruled 1966-2004) Moved the royal residence to Al Manhal palace and kept his diwan at Qasr Al Hosn.
Sources: Jayanti Maitra, www.adach.ae
Skewed figures
In the village of Mevagissey in southwest England the housing stock has doubled in the last century while the number of residents is half the historic high. The village's Neighbourhood Development Plan states that 26% of homes are holiday retreats. Prices are high, averaging around £300,000, £50,000 more than the Cornish average of £250,000. The local average wage is £15,458.
How to join and use Abu Dhabi’s public libraries
• There are six libraries in Abu Dhabi emirate run by the Department of Culture and Tourism, including one in Al Ain and Al Dhafra.
• Libraries are free to visit and visitors can consult books, use online resources and study there. Most are open from 8am to 8pm on weekdays, closed on Fridays and have variable hours on Saturdays, except for Qasr Al Watan which is open from 10am to 8pm every day.
• In order to borrow books, visitors must join the service by providing a passport photograph, Emirates ID and a refundable deposit of Dh400. Members can borrow five books for three weeks, all of which are renewable up to two times online.
• If users do not wish to pay the fee, they can still use the library’s electronic resources for free by simply registering on the website. Once registered, a username and password is provided, allowing remote access.
• For more information visit the library network's website.
The White Lotus: Season three
Creator: Mike White
Starring: Walton Goggins, Jason Isaacs, Natasha Rothwell
Rating: 4.5/5
more from Janine di Giovanni
Key facilities
- Olympic-size swimming pool with a split bulkhead for multi-use configurations, including water polo and 50m/25m training lanes
- Premier League-standard football pitch
- 400m Olympic running track
- NBA-spec basketball court with auditorium
- 600-seat auditorium
- Spaces for historical and cultural exploration
- An elevated football field that doubles as a helipad
- Specialist robotics and science laboratories
- AR and VR-enabled learning centres
- Disruption Lab and Research Centre for developing entrepreneurial skills
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
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
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