When she heard that her baby boy suffered from thalassemia, she was broken-hearted. For a brief period, there seemed to be no hope. Slowly, she ventured out to seek a ray of light for herself, but ended up becoming the Florence Nightingale to hundreds of thalassemic patients in the country, writes Vijaya George.

Khalida Khammas stepping up the fight against thalassemia

How does it feel to wake up one morning and discover that your six-month-old baby will need intravenous medication 12 hours every day for the rest of his waking life? What would you do if you learnt that he would need a blood transfusion once every three weeks for the rest of his life? How does it feel to discover that your little baby suffers from thalassemia?

"I was too shocked," says Khalida Khammas, when she discovered that her six-month-old baby was diagnosed with thalassemia. "I didn't even know what it meant until the doctor told me." At 22, even before the full implications of being a first-time mother had sunk in fully, Khalida was already coping with another bane of the Arab region -- thalassemia, a genetic disorder that reduces the haemoglobin content in the body and causes acute anaemia, which, if not treated, could be fatal.

Meet Ambareen, a 22-year-old thalassemic. My parents are first cousins. They brought me here when I was two. We are from Karnataka, India. Because my brother and I have thalassemia, we came here as there is good treatment out here. Those facilities are not there in India. My mom thought 1 or 2 transfusions and it would be fine. But it was life long. She was not happy. I changed a lot of schools because we have to take a lot of leave for this.   After school, I did a computer and secretarial course and got a lot of certificates for drawing. One day, I want to become a Fashion Designer. I want to go to India to study for it but they have no treatment there. So I can't go.   Earlier, I used to cry all the time that I was not normal But now, it's okay. This place (the Centre) is like my home for me. My second family! I work here now during the summer and they give me a salary.   We tried for bone transplant but my mum said if there is even 1% risk, then we'll die. Anyway, within 2 or 3 years a cure will come. So, we're waiting.

That was 12 years ago in the year 1989. Today, at 34 and mother to two more children, -- both healthy -- she has not just taught her oldest child to cope with the problem but has helped hundreds of other thalassemics and their families in the region to lead normal lives as well. In recognition of her service to society, Khalida was awarded the Dubai Quality Award for Excellence by His Highness Sheikh Mohammed bin Rashid Al Maktoum, Crown Prince of Dubai and UAE Defence Minister.

As a young girl, Khalida dreamt little, ordinary dreams. With a diploma in teaching from Emirates University in Al Ain, a job at Al Khansa School as Arabic teacher, a marriage to her first cousin -- as is the custom in most Arab families -- and a beautiful little baby boy whom they named Mohammed, she thought she was leading a full life. Until she stepped into the Thalassemia Centre at Al Wasl Hospital, Dubai with her son in 1989.

"The first six months, he was a little pale. But he was very active," says Khalida. "Then, when they told me he is a beta thalassemia major, I was too shocked. I didn't know what to do." But she didn't despair. Instead, she started getting involved with the activities at the Centre.

Seeing that the Centre with its white walls and pin drop silence would be a boring place for children, Khalida volunteered to brighten up the place. After all, a blood transfusion took a whole day -- from approximately 11 in the morning to 6 in the evening -- and if a child had to sit through it with tubes sticking in his hands every month, he may as well have a little something to cheer him up, she thought. Colourful pictures and cartoon characters were put up on the walls. Music played in the background. Toys were introduced. Birthday parties were hosted for patients. Gradually, craft activities were included and tours were arranged for the children inside and outside the UAE. Even the nurses donned colourful aprons.

"All these were personal efforts ... her personal contribution," says Dr. Essam Dohair, Specialist in Blood Diseases at the Thalassemia Centre. "She was determined to create a new environment for them and she did it. Earlier, children were fighting with their parents because they didn't want to come to the Centre for blood transfusion. Now, it's just the opposite," he says.

Najib Habib after a blood transfusion

20-year-old Ambareen, a patient at the Centre agrees. "She's like a mum to people. She'll do anything to cheer up the kids," says Ambareen.

Meanwhile, the Management at Al Wasl hospital saw in Khalida a woman dedicated to the cause of thalassemics. As mother to a thalassemic and in tune with the medical as well as social problems associated with the disease, the hospital realised that she would be a valuable asset to the Centre. In 1995, the hospital offered her a post they had never given anyone before -- the role of a social specialist. Khalida accepted the challenge, quit teaching and plunged headlong into the project.

I wanted to teach parents and children that yes, they do have this problem. But they have to learn to live with it like normal people," says Khalida. Talking to parents isn't half as easy as interacting with students in the classroom, she discovered. Most adults are reluctant to even disclose to their relatives that their child suffers from the disease let alone discuss it with a stranger. But Khalida needed to make friends with parents so as to understand how best to "manage" their child and offer appropriate support since "each family" according to her "is a different story."

A common problem that needs to be addressed is finance. On her field trips, Khalida has often been witness to immense poverty, where whole families share a single room and live in dire conditions. In one instance, when a family with two thalassemic patients showed no signs of improvement despite daily medication, she visited their home and discovered to her horror that "there was no fridge in their house. And this medicine," she says "must be kept in the fridge. So it was not having any effect." Funds were raised immediately and a fridge was donated to the family.

A child undergoes blood transfusion

But there were more such families who needed help. It would have been inappropriate to seek more financial aid from the Government of Dubai, which already bears the entire expenditure of the Centre and its patients in terms of offering free medication and patient care. Still, she got the Ministry of Labour and Social Affairs to give such families a monthly allowance.

But that was not enough. Seeing that funds needed to be raised and the public educated about the disorder, parents of thalassemics patients at the Centre got together and formed the Emirates Thalassemia Society. Khalida, herself, heads the Society's Women's division.

The 34-year-old is obviously no slow worker. She welcomed medical practitioners and Islamic scholars to the Centre to address the people's personal concerns on whom they could marry as well as the religious implications of aborting a foetus that is certified to be suffering from a congenital defect like thalassemia. The idea of terminating a foetus diagnosed as a beta thalassemia major is slowly gaining acceptance on the condition that it is done before it completes a 4-month term. As of now, the Centre has assisted 65 pregnant mothers with a history of the disease to go abroad to check the health status of the foetus and to terminate it if it is diagnosed as a thalassemia major.

Meet Mohammed Nasir Hussain, 19 going on 20. We are 4 children. I am the youngest. Only I have this. I 'm doing my 1st year in O' Levels. I'm from Karachi, Pakistan. They found out when I was 9 months old that I was sick. I have a lot of friends here (at the Centre). We go out. For us, this is normal because we have nice facilities in Dubai.   Bone marrow is not possible in my age. It's risky. Under 13, it is more possible. So bad luck. My time has gone!   My dream is to be a very popular person. Maybe showbiz! Who knows!

To reduce risks, "a thalassemia major must only marry a normal person -- not even a carrier," says Khalida. The UAE government has made it mandatory for couples to be screened for the disease prior to their marriage but it does not stop anybody from getting married. Like Khalida says, "we don't have any rule to stop marriages in love story".

The Centre's biggest success story is Haseena (name changed) -- a beta thalassemia major -- married to a "normal" cousin. She is the only thalassemic in the region to have delivered a healthy baby girl. The secret? "Proper management" says Dr. Essam, who has been at the Centre for the past 14 years and is familiar with the history of every patient there. "Her mother was aggressive in ensuring that she and her brother (also a thalassemic) took their medication and blood transfusions on time -- even now, after marriage," he explains. "That's why they are living their life normal".

But Khalida's work is not over. 12 years may have achieved a great deal but there's still much to do. At the Centre, she has now begun to offer summer jobs to older thalassemics like Ambareen and 19-year-old Mohammed to engage younger patients in craft activities and games. On the political front, she is lobbying for a national campaign through the UAE government to screen people for thalassemia. If she manages to do that, it's yet another first for the region.

But no achievement is more rewarding than to hear patients like Mohammed describe their life as "normal". "For them, sleeping with the pump all night has become a normal thing … like wearing a wrist watch," says Dr. Essam. "and that! That is her achievement. That she has got these children to accept it as normal and lead a full life."

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Understanding Thalassemia Would you like to respond to this article? Click here! About Thalassemia Thalassemia is a genetic blood disorder that affects a person's ability to produce haemoglobin. Haemoglobin is the protein in our red blood cells (RBC) that carries oxygen and nutrients to all parts of the body. Without it, the body loses its ability to survive. The people we are concerned with are beta thalassemia minors and beta thalassemia majors. A person with thalassemia minor will experience no significant health problems, except a possible mild anaemia, which cannot be corrected with iron supplements. Thalassemia major is a serious disease, which requires regular blood transfusions and lifelong medical care. How does one get Thalassemia? Thalassemia is an inherited disorder. When two thalassemia minors have a child, there is a 1 in 4 risk (25%) that the child will be a beta thalassemia major (the severe form of thalassemia, where both pairs of genes are defective). This results in severe anaemia anytime after 3 months of age. It is not contagious and does not develop later in life, nor can a child outgrow it. Both parents must have the thalassemia trait in order to pass the disease on to their child. How can you prevent this? 55% of thalassemic cases are the result of intermarriage among close relatives. As it is difficult to shake off tradition, the next best thing to do would be to be aware of the risks if you are a thalassemia carrier. The UAE government has made a pre-nuptial checkup mandatory to test national couples for diseases like Thalassemia. Today, it is possible to precisely diagnose before three months of pregnancy (between 9 and 11 weeks), whether the foetus is normal, is a carrier (thalassemia minor) or has the disease (thalassemia major). The parents then have the option of terminating the pregnancy if the foetus is diagnosed as a beta thalassemia major. How is Thalassemia treated? A person who has thalassemia major cannot produce enough haemoglobin to survive, and therefore needs blood transfusions every three weeks in order to grow and live normally. This, however, leads to an iron overload, which is removed by taking a nightly infusion of a medicine called Desferal. What happens if a Thalassemic stops his medication? "They die early. They have just signed their death penalty," says Dr. Essam, Specialist in Blood Disorders at the Thalassemia Centre, Al Wasl Hospital, Dubai. "Before this, children never lived beyond 20 years," says Dr. Essam referring to thalassemia major children. " But now we have 33 and 34 year-old patients, who have finished high school. Is there a permanent cure to Thalassemia? Yes. Simplistically put, a bone marrow transplant could work but the operation is very expensive (Just the operation would cost approximately $150,000). But there are other more complicated issues at hand like the age of the patient and finding a matching donor. About the Thalassemia Centre, Al Wasl Hospital, Dubai Inaugurated by Sheikh Hamdan bin Rashid Al Maktoum, the Dubai Thalassemia Centre at the Al Wasl Hospital is the only specialised centre in the whole of the Gulf region. It is accredited by the World Health Organisation and Thalassemia International Federation as one of the best centres in the world. "We do the best management for thalassemia-diseased children here. Blood transfusion and daily medication is free. We also offer genetic counselling. All this is possible because of the full co-operation of the Dubai government. In fact, this is the only centre in the world that gets full support from the government," says Dr. Essam The Centre provides excellent patient care and also offers counselling services for several other inherited blood disorders in the UAE population, which include Sickle cell disease, Alpha-Thalassemia and G-6-PD deficiency. Tel no: 04-3063231/3063230 Year 2000 statistics 2000 statistics show that over 70 million in the world are affected by the Beta Thalassemia trait. One in 20 UAE nationals is a carrier of the Beta Thalassemia trait. There are 670 registered cases at the Centre, of which 60% are nationals and 40% expatriates -- from other GCC countries, Arab regions and Asia. But this is just a fraction of thalassemia majors in the whole of the Gulf region. 70% of the Centre's patients are below 13 years of age. 55% of the cases are the result of consanguineous marriages. Two patients are married, one has a healthy baby, and three others who graduated from reputed universities outside the UAE are now employed. On an average, 25 patients come to the Centre everyday for blood transfusion and 2 units of blood are required per person. The Centre uses approximately 10,000 units of blood everyday. After the educational campaign they did, the society has no new diseased babies from families that have visited the Centre.

Lend a helping hand! The Doctor solicits philanthropists and the private sector to come forward and support the Centre so that it can continue to offer free services to patients. Those who wish to donate to the cause of thalassemic patients may donate money to : Dubai Islamic Bank A/c No. 02 520 6224989 01