Emarat sponsors the Thalassemia Awareness Campaign in its service stations

April 29, 2009

Courtesy by: ameinfo.com

In harmony with its strategy and commitment to its community and all its different issues, Emirates General Petroleum Corporation ‘Emarat’ participates in sponsoring the Thalassemia Awareness Campaign which is held under the title ‘The future of your children is in your hands, let them not suffer for the rest of their life.’

The campaign is organized by Emirates Thalassemia Society during the period of 2-8 May. Emarat will be supporting this campaign in all its service stations.

Mr. Abdulla Hassan Al Noman, Manager, Retail Sales Operations at Emarat, stressed the importance of cooperation between the different authorities to defeat this disease, saying the great leadership in the UAE is providing all the support and care needed to alleviate its negative effects.

Pioneering directions had been issued 16 years ago to establish a specialized institution for Thalassemia, which became the first centre of its kind in the Middle East that offers treatment and precautionary services to all the children of the society, whether nationals or expatriates.

Mr. Al Noman expressed his hope that Emarat’s participation in this campaign, along with the other participations from companies, institutions and individuals, shall support this humane initiative and alleviate the suffering Thalassemia effects, and help in boosting the morale of the sick in addition to help them face this disease which can be lived with if the person is equipped with willpower and strong determination

Thalassemia is an ailment that is found all over the world, with higher rates in some countries, such as those around the Mediterranean, as such, it is also called ‘the Mediterranean Anemia’. It is one of the oldest known diseases in the region, and it was first recognized by Dr. Cooley in 1925, when he diagnosed several cases of severe anemia accompanied by bone deficiencies

Thalassemia is a hereditary disease which affects the production of blood, so that Hemoglobin in the red blood cells is rendered unable to do its job, causing a hereditary and chronic anemic disorder which affects children in their early years as a result of inheriting two deficient genes, one from the father and the other from the mother.

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Dubai’s first private pediatric oncology clinic to establish cancer tumor registry

April 29, 2009

Courtesy by: ameinfo.com

The first dedicated specialist pediatric Oncology/ Hematology centre in Dubai’s private healthcare sector has become fully operational and will establish a tumor registry to collect data and help build knowledge in the Gulf and Middle East, tracking cancer patients and the outcome of their treatment.

The Pediatric Oncology specialist clinic at the American Hospital Dubai is already treating children and adolescents up to the age of 18 and providing support to patient families, as part of the department of Hematology and Oncology in the Cancer Care Center at the hospital.

‘We are winning the war against several childhood cancers,’ says Head of the new service, Dr Nidal Mahgoub, American Board Certified Consultant Pediatrician Oncologist/ Hematologist, who recently joined the hospital from the US.

‘In the US for example, the cure rate for Acute Lymphoblastic Leukemia is very high; around 85-90 per cent of patients can live free of cancer with the proper treatment.

Most child cancer survival rates have improved significantly. The key to success is providing the right treatment and we believe our new clinic will make a significant contribution to the region by providing US quality care for our young patients.’

The Pediatric Oncology/Hematology clinic is a multidisciplinary unit that treats cancer cases including leukaemia and solid tumors together with blood disorders – such as Sickle cell anemia, Haemophilia and Thalassemia – amongst children and adolescents.

The dedicated unit provides a wide range of treatment options including chemotherapy, immune-therapy, psychological support and palliative care.

The hospital’s plan is to expand the unit and establish a Regional Oncology Center by introducing radiation therapy and a new investigational PET/CT scanner; the Center will soon become a fully equipped facility offering a comprehensive set of services for patients across the Middle East.

‘The benefits of establishing a tumor registry are that we are also contributing to the wider knowledge of the disease in the region by sharing information and data with other healthcare professionals and institutions,’

adds Dr Nidal.

‘We track our patients and monitor the effects of various treatments on tumors, which can vary depending on the different factors involved in each case. Building this database of knowledge helps practitioners learn about the incidence and prevalence of cancer cases in the region and can help guide healthcare professionals to the best treatment options.’


Noor Islamic Bank to organize second blood donation drive

April 29, 2009

Courtesy by: ameinfo.com

Noor Islamic Bank PJSC today announced it has expanded the scope of its second Blood Donation Drive to include donors from the public as part of a country-wide programme to raise awareness on Thalassemia.

Staff and visitors will donate blood from 9.00am to 2:30pm at the Bank’s headquarters in Emaar Square, Building-1 on 29 April.

The campaign, to be held with the support of Dubai Department of Health and Medical Services, is part of the initiative to support the UAE’s programme of eradicating the disease in the country by 2012.

Hussain Al Qemzi, Group CEO, Noor Islamic Bank, said:

‘Thalassemia is a serious blood disorder that affects one in 16 Emiratis each year. It is a condition that is not confined to the sufferer alone, but affects the entire family as well. At Noor Islamic Bank, we are committed to playing our role in not only raising awareness about this genetic condition, but also lending our support by donating blood to organizations that help patients and their families.’

The blood donation drive is part of the Bank’s corporate social responsibility programme that supports community needs including special needs, breast cancer and charity initiatives.

The Blood Donation Centre in Al Wasl Hospital will receive the blood. The Centre performs various humanitarian duties such as providing blood for several Thalassemia children who are in constant need of transfusion every three to four weeks. The donations will also be used by cardiology patients who have undergone open heart surgeries, those suffering from leukemia and patients with other blood disorders.

Thalassemia is a genetic blood condition that is inherited by children from their parents. The condition limits the patient’s ability to produce enough haemoglobin in the blood. Children born with Thalassemia usually develop symptoms of severe anaemia within their first year.


VN successfully develops pre-implantation genetic diagnosis

April 29, 2009

Courtesy by: english.vietnamnet.vn


VietNamNet Bridge – Local scientists have successfully researched pre-implantation genetic diagnosis of human embryos, announced Secretary General of the HCM City Reproductive Endocrinology and Infertility Association (HOSREM), Ho Manh Tuong.


In the early 1990s, American scientists began researching and were successful in pre-implantation genetic diagnosis of human embryos. The research aims to avoid abortions during the pre-antenatal examining period through the early discovery of foetuses with malformations.


This technique has been applied widely in the world, including Southeast Asian countries like Thailand, Malaysia and Singapore.


There are around 300-disease related genes that can be detected by pre-implantation genetic diagnosis. Pre-implantation genetic diagnosis to discover thalassemia disease is promising in Vietnam.


In early 2009, the project was approved by the HCM City Science and Technology Department. This is a municipal scientific project conducted by scientists of the HCM City Medical and Pharmaceutical University, HOSREM and the Van Hanh Hospital.


HORESEM’s Tuong said that after the project is checked and taken over, the technique will be transferred to big hospitals.


Relatives marry despite risks to children

April 20, 2009

Courtesy by: middle-east-online.com

Closely-related couples in Syria are choosing to marry even when blood tests detect genetic conditions.

DAMASCUS – When she turned 17, Nagham Salahiya’s parents announced that they had found a good husband for her – her first cousin.

The couple went to a private clinic for a mandatory pre-marital blood test, which revealed that they both carried a recessive gene for thalassemia, a potentially fatal genetic blood disorder that could affect any children.

Nonetheless, they decided to go ahead with the wedding and married in January this year.

“My family set up this match and it would have shamed them if I refused the man they picked for me,” said Salahiya. “I am clinging to the hope that all our children will be born healthy.”

Dr Ghassan Qanatri, head of a doctors’ association in Idlib in the northwest of Syria, reckons that consanguineous unions between cousins account for between 35 and 50 per cent of all marriages. Syria’s health ministry gives a lower figure of 20 per cent for marriages involving close relatives, a definition that includes first and second cousins.

Whatever the precise figures, Dr Qanatri says there is a close correlation between such marriages and the incidence of birth defects, although accurate statistics on the prevalence of genetic diseases and their link to consanguineous marriages are thin on the ground.

Last year, a law was introduced requiring couples to produce a medical certificate before they can be legally married. This was aimed at lowering the prevalence of hereditary diseases, particularly blood disorders such as thalassemia and sickle cell anaemia.

Although a couple can still marry if the results show that one or both partners has a genetic condition, Dr Qanatri said the test means they are aware of it and of the potential consequences for children they may have.

In the case of thalassemia, if both parents are carriers of the recessive gene, there is a 50 per cent chance that their child will also carry the gene and a 25 per cent chance that he or she will develop the condition.

“Blood disorders such as thalassemia are painful, crippling, life-long diseases that currently have no cure,” said Majid Yaziji, director of the Thalassemia Centre in Idlib city. “Patients require regular blood transfusions and extensive, ongoing medical care.”

He added “the only way to detect the presence of the trait is through a blood test called haemoglobin electrophoresis.”

While couples can go to any medical centre for genetic testing, the health ministry has also opened 20 “marriage clinics”, one or two in each of Syria’s 14 provinces.

Plans are under way to open these clinics in every major Syrian city, said Yaziji.

Marriage clinics and government hospitals charge 43 US dollars for the test, while private hospitals charge up to 170 dollars.

Many couples still choose to marry even when they discover they could pass on genetic disorders.

Nadia Bakri, 16, and her first cousin, Muhsin Bakri, 32, decided to marry even after blood tests from Yaziji’s centre revealed that they both carried the gene for sickle cell anaemia.

In the past six months, Nadia has had two abortions after foetuses tested positive for the blood disorder in prenatal tests.

A fatwa issued by the World Islamic League in 1990 says that Muslims may undergo abortions up to 120 days after conception if an unborn child tests positive for a serious disorder.

“Thousands of other Syrian couples face the same heartbreaking choice as Nadia and Mushin,” said Yaziji. “Mushin was very angry on both occasions, and would yell at our doctors when they tried to tell him he’d been warned about the increased likelihood of these diseases.”

Yaziji said societal and family pressure on couples to marry in spite of the medical risks lead many people, particularly men, to bribe doctors to alter the test results.

“I forged a medical report for my brother stating that our family is free from hereditary diseases,” said Um Ahmed, a nurse at a hospital in Al-Raqqa, northeast of Damascus.

“There are no specific penalties in place so it’s very easy to do,” she added.

Hasan Kherbik, a lawyer from Latakia, is calling for new legislation which would mean medical employees caught altering test results would be punished.

“The government will never prevent outright two cousins from marrying each other, but there should be laws against doctors who alter these medical reports,” said Kherbik.

“Maybe the couple will decide to go ahead with the marriage [regardless], but they should at least know what they are getting into first.”

Meanwhile, experts say that inadequate testing can mean that couples given a clean bill of health later find that they are in fact carrying genes with a risk of hereditary disorder.

According to Qanatri, couples who want more thorough testing may have to travel a long way and be willing to pay extra at a reputable clinic with better facilities.

“There are hereditary diseases that cannot be detected with the tests we are administering at most private hospitals and clinics,” he said. “Hereditary testing is expensive and only the handful of newly-created marriage clinics have the necessary equipment.” (IWPR)


Sisters feel the bond in their bones

April 20, 2009

Courtesy by: nst.com.my

KUALA LUMPUR: Sisters usually have a bond that nothing can break.

But for Nur Aliah Natashya Mohd Yusoff, 9, and Nur Zulaifa, 10, the bond goes beyond an emotional link.

Aliah carries bone marrow from her kakak which helped her beat beta thalassemia major seven years ago.

Beta thalassemia major is an inherited blood disorder that prevents or reduces the body’s ability to produce hae-moglobin and causes anae-mia. Haemoglobin is part of the red blood cell.

Fully recovered and active in school, Aliah remembers little of going in and out of hospital for blood transfusions and checkups.
But Zulaifa remembers only too well the pain she felt after doctors took bone marrow from her.

“It was very painful after the procedure but I was happy to have helped my little sister.”

Aliah was so grateful to Zulaifa that she gave away her favourite teddy bear and a Barbie doll.

“I also give her a birthday card every year,” she added shyly.

Today, the sisters love to share their toys and other things in a relationship that they have developed over the years.

When Aliah was 20 months old, her mother Zarina Said realised that something was wrong with her younger child.

“She had high fever one day and was admitted to the hospital and it was then that she was diagnosed with beta thalassemia major.”

She said Aliah quickly deteriorated from the intermediate stage to major stage.

Soon, doctors felt a RM45,000 bone marrow transplant should be carried out.

University Malaya Medical Centre paediatric bone marrow transplant unit consultant Associate Professor Dr Hany Ariffin recommended that marrow be taken from Zulaifa, who was a fully-matched sibling donor.

Doctors told Zarina that this made Aliah’s chances of recovery better.

She recalled that before the transplant, Aliah, who although looked healthy and seemed active, tired easily due to the lack of red blood cells.

Besides chemotherapy, Aliah also underwent a four-day treatment to increase her red blood cells prior to the bone marrow transplant.

“Aliah’s hair came off in tufts and she cried saying that she did not want to be bald.”

Even after the transplant, doctors were not sure that the treatment was a success.

But there’s no doubt that Aliah has recovered as she is like any other child her age.

She is quiet and smiles a lot, unlike chatty Zulaifa.

Zarina said: “She is also a fussy eater and dislikes vegetables and drinking water. She will only eat fruits like apples and mangoes but not unfamiliar fruits like lychee. But she loves sweet yoghurt drinks.”

She, her husband and Zulaifa were carriers of the disorder.

“I will tell my girls later to get their future partners to go for blood screening to ensure that they have healthy kids.”

And what does Aliah wants to be when she grows up?

“I want to be a doctor so that I can treat people who suffer from the same disorder as me.”

NSTP Charity Unit senior executive Aida Nordin said the RM45,000 was collected in record time, two days after the New Straits Times ran the story.

Two readers donated RM20,000 and RM30,000.

Those interested in donating to the NSTP fund can send their contributions to: The Cashier, The New Straits Times Press, 31 Jalan Riong, 5900 Kuala Lumpur.

Cheques should be made payable to The New Straits Times Press (M) Bhd.


India gets its first “Marrow Donor Registry” formed

April 20, 2009

Courtesy by: Indiaprwire.com

Announcement of the “Creation of First Marrow Donor Registry in India”; Prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India discussed important roadmap for moving forward, in making these registries viable

Dr. Ashok Kirpalni & Dr. Sunil Parekh of Marrow Donor Registry India organised a seminar along with prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India at the Bombay Hospital. “Creation of First Marrow Donor Registry in India” was announced and important roadmaps for moving forward in making these registries viable were discussed during the seminar. (List of Speakers is attached below)

“Every year nearly 40,000 patients in India die because unrelated Marrow transplant facilities are not available in India”, said Dr. Kirpalani. “In the absence of viable Marrow Donor registries in India, a person of Indian origin faces two major problems. Firstly – The western registries have extreme paucity of matching volunteer donors for Indian patients, since Indians are genetically different from the western population; they need donors of Indian origins and Secondly – the rare Indian who does find a matching donor from these databases will have to go abroad for a bone Marrow transplant and incur heavy costs which ranges between 1–1.5 crores”, he explained.

“With the intention of eliminating these serious problems that our Indian patients encounter, we are setting up a Bone Marrow Registry having a national outreach in India. Our sole objective is to help patients with leukaemia (Blood Cancer), thalassemia and other blood disorders who are in need of a Marrow Transplant”, said Dr. Kirpalani addressing the media during conference.

The facility of unrelated Marrow Donor Transplantation is highly advanced in developed nations. In such countries, HLA typing and matching with Voluntary Unrelated Donors is well established. Currently, there are over 12 millions voluntary Unrelated Marrow Donors already registered worldwide. Their tissue typing (HLA typing) results are available in computerized databases. Patients from such countries can usually find a matching Donor and can have Marrow transplant done. But unfortunately in India the total number of unrelated voluntary donors is negligible. Hence there was a need in India to have a Marrow Donor Registries of its own, which naturally will have donors of Indian origin. Their tissue typing reports will be available to patients globally, thus helping patients from within India as well as Indians worldwide.

“We need to have 1 million voluntary altruistic donors. The major cost is of setting up a HLA tissue typing of the donors. Also substantial investment is required in computers, database information processing facilities to search throughout the local as well as worldwide registries as rapidly as possible. This task, working at the edge of medical technology, also requires staff of a high calibre”, said Dr. Sunil Parekh.

“The overall cost of such a venture will be a few thousand crores. Hence in the first phase, we are planning to establish registries with 1,00,000 altruistic donors who pledge to donate their bone marrow stem cells, which will need Rs. 75 crores within the next 5 years”, he added.

The implementations of the various processes have been accelerated by preparing a website and database program which is being done by M/s Syntel, audio/video presentations and M/s Mudra communications. Both the projects are also being sponsored by them respectively.

“We need the understanding and co-operation of large industrial houses and businesses as well as social organisation in order to achieve our goal without which this huge humanitarian endeavor will not be possible. Hence we take this opportunity to request one and all to come forward and lend a generous helping hand in saving the lives of those, where Bone Marrow Transplant is the only hope of cure”, said Dr. Kirpalani addressing all at the end of the seminar.


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