Courtesy by: 7days.ae
Nichola Jones finds out about the dangers of a chronic disease during a visit to a thalassemia centre in Dubai
With a look of intense concent-ration on his face, ten-year-old Ali Sahun is a typical school-boy, desperate to beat the computer in a tense football video game.
But life is not completely normal for the youngster as blood is being pum-ped into his body through a drip attached to him while he plays – a routine he will go through every three weeks for the rest of his life.
“He’s been having them since he was three months old, he’s used to it now,” explains Ali’s mum Naseem. “Sometimes he gets tired and restless a few days before he’s due for the blood but he doesn’t let it affect him.”
Ali was diagnosed with the hered-itary blood disorder thalassemia, which restricts hemoglobin production, when he was a baby and is among the one in 12 people in the UAE either infected by or carrying the disease.
He now attends Al Wasl Hospital’s Thalassemia Outreach Centre – the only of its kind in the Gulf and the first to be opened in the Middle East. It not only offers medical treatment but also vital counselling and support as sufferers come to terms with their situation.
Naseem says: “I am a carrier and after I was pregnant my husband was tested and he was also a carrier so we knew Ali would have it. Sometimes Ali asks why he doesn’t have a brother or sister and we try to explain why – it would have been a big risk.”
It is possible to be a carrier without suffering from the illness but there is a 25 per cent chance of the disease being passed to offspring if both the parents are carriers.
Centre coordinator Dr Essam Dohair says premarital tests for the blood disorder are now compulsory for UAE nationals and expats and that fiancés who ignore medical advice to separate could inflict a lifetime of gruelling treatment, as well as the risk of organ failure and premature death, on their future children.
“Today, I met a couple who are both carriers.
When we are talking about the possible options, we advise them to go their separate ways,” Dohair said. “If it’s an arranged marriage, it is easier because they don’t know each other, there is no love story. We advise them to find another partner who is not a carrier – why not?”
In order to register a marriage in the UAE couples must present a thalassemia screening certificate as part of a nationwide campaign to fight the illness.
Sufferers must have a blood transfusion every three weeks for the rest of their lives and face having a drip inserted into their stomachs for 12 hours every day to counteract rising iron levels in the body. Haemoglobin transports oxygen to the body’s organs but thalassemia sufferers don’t have enough.
If it is not managed properly, the condition can cause excessive bone growth, hormone defects and, ultimately, death.
The only way it can be cured is through a bone marrow transplant or stem cell treatment – neither of which are available in the UAE – and both are extremely expensive.
Dohair says many couples ignore advice to scrap plans to tie the knot and find new partners if they are found to be carrying the chronic disease in a bid to tackle the illness.
“Before they become parents they must know they are carriers so they can avoid having this diseased child,” warned Dohair.
“This is a chronic disease for life, it’s not something that you can ignore.”
Dohair advises people to get screened as early as possible to avoid heartache in the future.
“We have couples who come here for screening a few days before the wedding party.
They have booked the hotel, all the arrangements have been made.
The advice is the same – do not get married. Almost all of them refuse. If a girl is screened earlier, it’s better so she will know before she falls in love.”
The disease is also taking its toll on blood stocks.
Banks are desperate for donations as up to 50 per cent of Dubai’s blood supply is used by thalassemia patients every year.
The centre has 750 patients on its books – 450 of which need regular transfusions, using up to 20,000 units of blood per year.
Dohair said “This is our second problem. We are desperate for blood donations here, not just for these patients but for Dubai in general.”
Media studies student Lubna Iqbal plans to make a documentary about thalassemia to break the taboo of the illness she and her family will live with forever.
The 20-year-old Pakistani says: “I was three months old when they found out I had it. I had a fever and they brought me to hospital, then I was diagnosed. I have three brothers and sisters. I am the fourth child and the one with thalassemia.
“People really need to know more about it – most people have no clue. When I was at school and now at university, people are always asking me about it.
“They are very supportive and I tell them they should be screened.
“When I was 18, I was going to have a bone marrow transplant in Pakistan.
Both of my sisters were exact matches, which was very lucky.
But at the last minute, the doctors and my parents decided it was too big a risk to take, there are too many complications.
“My brother lives in the UK and is married to my cousin and they are both carriers. When his wife was pregnant, they had a test on the baby and found it had thalassemia. They were advised to have an abortion so they did. They now have other children who are fine.
“It’s better to get tested. I would like to have a family one day and as long as my husband is not a carrier, then I can. Thalassemia doesn’t stop you doing the things you want to do.”