UAE Genetic Diseases Association runs series of Thalassemia screening campaigns

May 26, 2010

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UAE Genetic Disease Association (UAEGDA), the sole non-profit genetic organization in the UAE, has begun a month-long screening campaign to bring attention to the presence of thalassemia in the UAE following the commemoration of World Thalassemia Day earlier this month.

According to the Genetic and Thalassemia Centre in Dubai, one in 12 persons in the UAE is said to be a carrier of the disease.

The latest UAEGDA campaign is touring locations throughout the UAE with over 500 volunteers from various institutions assisting in the effort. Participants are working under the mission of educating the population about common genetic disorders (such as Thalassemia, Sickle Cell Anemia, G6PD Deficiency & Diabetes) and informing them about the free screening and counselling services provided by the UAEGDA. Different venues will be targeted throughout the month of May including Deira City Centre, 11 different Emarat and ADNOC fuel stations across the UAE, and various colleges and corporate houses.

Nearly 5,000 individuals were tested for the disease in the last year, according to UAEGDA officials, and an expansion of the group’s capacity has attracted partners throughout the country, including groups like the UAE Marriage Fund—a partner in UAEGDA’s current campaign.

The benefits of screening tests lay not only on an early detection of the disorder, but also preventing the birth of children born with thalassemia major. As in the case of all hereditary recessive diseases, there is a 25% chance for the child of thalassemia-carrier parents to become affected, another 50% chance of which will be carriers, while the rest go on seemingly unaffected.

“Thalassemia is a major public health issue in the UAE, which affects so many families at social, medical, financial and psychological levels,” says Dr. Maryam Matar, Founder & Chairman of UAEGDA. “Blood screenings campaigns in general are the best way to help reduce the presence of hereditary diseases in the country. Certain diseases like thalassemia and diabetes have especially high prevalence in the UAE, and this is the first step in identifying a problem that could extend for generations to come.”

A great deal of scientific data has in fact been documented to show trends of selected genetic disorders in UAE communities, and it is the mission of UAEGDA to make the country free from births of children born with thalassemia by 2012.


May 21, 2010

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Beta-thalassemias are a group of hereditary blood disorders characterized by anomalies in the synthesis ofthe beta chains of hemoglobin resulting in variable phenotypes ranging from severe anemia to clinicallyasymptomatic individuals. The total annual incidence of symptomatic individuals is estimated at 1 in100,000 throughout the world and 1 in 10,000 people in the European Union.

Three main forms have beendescribed: thalassemia major, thalassemia intermedia and thalassemia minor. Individuals with thalassemia major usually present within the first two years of life with severe anemia, requiring regular red blood cell(RBC) transfusions.

Findings in untreated or poorly transfused individuals with thalassemia major, as seen insome developing countries, are growth retardation, pallor, jaundice, poor musculature,hepatosplenomegaly, leg ulcers, development of masses from extramedullary hematopoiesis, and skeletalchanges that result from expansion of the bone marrow. Regular transfusion therapy leads to ironoverload-related complications including endocrine complication (growth retardation, failure of sexualmaturation, diabetes mellitus, and insufficiency of the parathyroid, thyroid, pituitary, and less commonly,adrenal glands), dilated myocardiopathy, liver fibrosis and cirrhosis).

Patients with thalassemia intermediapresent later in life with moderate anemia and do not require regular transfusions. Main clinical features inthese patients are hypertrophy of erythroid marrow with medullary and extramedullary hematopoiesis andits complications (osteoporosis, masses of erythropoietic tissue that primarily affect the spleen, liver, lymphnodes, chest and spine, and bone deformities and typical facial changes), gallstones, painful leg ulcers andincreased predisposition to thrombosis.

Thalassemia minor is clinically asymptomatic but some subjectsmay have moderate anemia. Beta-thalassemias are caused by point mutations or, more rarely, deletions inthe beta globin gene on chromosome 11, leading to reduced (beta+) or absent (beta0) synthesis of the betachains of hemoglobin (Hb).

Transmission is autosomal recessive; however, dominant mutations have alsobeen reported. Diagnosis of thalassemia is based on hematologic and molecular genetic testing.

Differentialdiagnosis is usually straightforward but may include genetic sideroblastic anemias, congenitaldyserythropoietic anemias, and other conditions with high levels of HbF (such as juvenile myelomonocyticleukemia and aplastic anemia). Genetic counseling is recommended and prenatal diagnosis may be offered.Treatment of thalassemia major includes regular RBC transfusions, iron chelation and management ofsecondary complications of iron overload.

In some circumstances, spleen removal may be required. Bonemarrow transplantation remains the only definitive cure currently available.

Individuals with thalassemiaintermedia may require splenectomy, folic acid supplementation, treatment of extramedullaryerythropoietic masses and leg ulcers, prevention and therapy of thromboembolic events. Prognosisforindividuals with beta-thalassemia has improved substantially in the last 20 years following recent medicaladvances in transfusion, iron chelation and bone marrow transplantation therapy.

However, cardiacdisease remains the main cause of death in patients with iron overload.

Anti-thalassemia efforts undermined by determined couples

May 21, 2010

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Despite the Kingdom’s efforts to reduce the spread of thalassemia through obligatory pre-marital blood tests, many couples who are carriers of the disease insist on getting married, an expert said on Thursday.

Basem Kiswani, president of the Jordanian Haemophilia and Thalassemia Society, said the number of new thalassemia cases annually had dropped by 50 per cent since the enforcement of the Pre-Marital Blood Test Law in 2004.

“When tests prove that a couple are carriers of thalassemia, we explain to them the nature of the disease and how it is going to affect their children, but some of them refuse to listen and insist on getting married,” noted Kiswani who also heads the thalassemia patients unit at Al Bashir Hospital.

Currently some 25 to 30 new thalassemia cases are registered in Jordan each year, compared to between 40 and 60 cases prior to the implementation of the law, he told The Jordan Times yesterday.

The Pre-Marital Blood Test Law obliges couples wishing to get married to carry out blood tests to ensure they are not afflicted with thalassemia in a bid to reduce the spread of the disease. The legislation does not prevent carriers of the disease from getting married.

According to Kiswani, there are currently around 1,000 Jordanians living with thalassemia and receiving treatment free-of-charge at hospitals.

He noted that the government’s annual spending on thalassemia patients reaches JD8 million, while both thalassemia and haemophilia patients need some 25,000 blood units per year.

According to a study conducted in 2007, 3-4 per cent of Jordanians carry the thalassemia gene. The study also indicated that 50,000 individuals were tested for thalassemia in 2007, with 86 testing positive for the disease.

Thalassemia is a genetically determined defect in haemoglobin synthesis that leads to stunted growth and can in some cases be fatal.

Mohammad Tarawneh, head of the Health Ministry’s non-communicable diseases department, said 1,200 thalassemia cases are registered in Jordan, noting that the expected annual increase ranges between 80-90 new cases.

Individual carriers of thalassemia are usually healthy but when combined with another carrier, there is a one in four chance that thalassemia could be passed on to their children.

On Saturday, the Jordanian Haemophilia and Thalassemia Society will mark World Thalassemia Day by holding lectures on the disease.

Azerbaijan’s first lady and Turkish prime minister’s spouse visit thalassemia center in Baku

May 21, 2010

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Mrs. Mehriban Aliyeva, President of the Heydar Aliyev Foundation, UNESCO and ISESCO Goodwill Ambassador, MP, along with Mrs. Amina Erdogan, spouse of Turkish Prime Minister Recep Tayyip Erdogan, visited the Thalassemia Center in Baku on May 17, AzerTAj state news agency reported.

Director of the Center Azar Karimov told the guest that the center was constructed as part of the Heydar Aliyev Foundation-initiated “For Life without Thalassemia” Program.

He stressed that the Center serves about 40 patients a day. Karimov pointed out there are approximately 1000 people living in Azerbaijan with thalassemia and most of them are under permanent control.

The Center which has three regional branches is up to the international standards.

Then, Mrs. Amina Erdogan also toured the transfusion hall, clinic, lab, reanimation, the molecular diagnostics lab, sterilization room and other facilities here

FAiTh on Geo Pakistan @ Geo News

May 19, 2010

FAiTh (Fight Against Thalassemia) was being invited on Geo Pakistan @ Geo News to speak on the occasion of World Thalassemia Day (8th May)

ADMAF supports Marriage Fund’s Thalassemia Health Awareness Campaign

May 15, 2010

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Within the framework of its commitment to the highest standards of social responsibility, the Abu Dhabi Music & Arts Foundation (ADMAF), announced today its support for the Marriage Fund in launching a health awareness campaign for Thalassemia.

Entitled “The Choice is Yours, for a UAE without Thalassemia”, the nation-wide campaign aims to educate the public about the disease and its prevention mechanisms. The campaign is also supported by the UAE Genetic Diseases Association.

Launched during a press conference held today at Emirates Palace, the campaign will feature informational leaflets and brochures distributed in educational and health institutions as well as offices all across the United Arab Emirates, in addition to advertisements and a media outreach element. As part of the campaign, the Marriage Fund with the support of ADMAF has also produced a film to provide information about the disease, its consequences and the steps that can be taken to prevent it.

The organisers and all supporting parties hope the campaign will help spread knowledge about the disease and contribute to the fight against Thalassemia in the wider UAE community.

H.E Hoda Al-Khamis Kanoo, ADMAF Founder, commented: “Our partnership with the Marriage Fund is rooted in ADMAF’s determination to reach out to the community. Our year-round community initiatives and the strong community program we implement has allowed us to enhance access to the arts for different groups of people from across the seven Emirates and touch the lives of disadvantaged groups through art.

It gives us great pleasure to support one of our valuable partners in its efforts to fight against a grave health risk in our society and requires great attention from us. Our involvement in this project reflects our commitment to continue expanding our collaboration with the UAE civil society.”

A committee for the first health campaign will be formed to carry out the instructions of H.E. Dr. Maitha Salem Al Shamsi, Minister of State and chairperson of the board of directors of the Marriage Fund. The committee will coordinate with all parties and ensure the completion of work according to agreed schedules and plans.

Thalassemia, a genetic blood disorder, is a serious public health issue in the UAE. According to some estimates, one in twelve people in the UAE are Thalassemia carriers. The disease, which often manifests itself in the form of anaemia due to low levels of red blood cells and haemoglobin, can be prevented through simple premarital tests.

The cooperation between the Marriage Fund and the Abu Dhabi Music & Arts Foundation started with the Abu Dhabi Festival 2010. In the lead up to the Festival and as part of its rich community program, ADMAF partnered with a vast network of civil society organisations, including the Marriage Fund, as a reflection of its commitment to embed the arts in the heart of the Emirates.

As title supporter of this campaign, ADMAF reaffirms its commitment to supporting its local community and to use the arts to communicate a powerful message to the society. The Abu Dhabi Music & Arts Foundation has since its launch been a strong advocate and supporter of many social and arts initiatives supporting the local community as well as the international arts community.

Govt to fund thalassemia patients’ treatment

May 15, 2010

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* Pakistan Baitul Maal MD says a monthly stipend of Rs 3,000 will be paid to each patient
* Announces gold medals for blood donors

RAWALPINDI: Pakistan Baitul Mal (PBM) Managing Director (MD) Zamurad Khan on Saturday said the children suffering from thalassemia would not be left alone and the government would bear the expenses of their medication and education.

Zamurad, who was the chief guest, was addressing a function held here to mark International Day of Thalassemia under the aegis of Thalassemia Welfare Society (TWS).

Representative of World Health Organisation (WHO) in Pakistan Khalif Bile Mohamud, TWS President Lt Gen Fahim Ahmed Khan, Green Task Force Chairman Dr Jamal Nasir, Murtaza Burhani, Dr Qayum Awan, Col (r) SK Tressler, Lt Gen Kamal Akbar and Dr Ayesha along with parents of thalassemia patients were also present on this occasion.

Zamurad said PBM would pay Rs 3,000 stipend per month to each thalassemia patient. In addition, all possible assistance would be provided to the parents of such children for providing them best healthcare facilities, he added.

He announced gold medals for those donors who would donate 50 pints of blood for the thalassemia patients. He expressed his pleasure that people like Lt Gen Fahim Khan, Murtaza Burhani and Kamal Akbar had devoted their life for the welfare of thalassemia patients.

It is an ample proof of their commitment that these gentlemen donated over 100 pints of blood individually for the noble cause. “Besides this, several officers of Pak Army are working day and night for the well-being of these minor patients and I salute to Pak Army for rendering this generous services to mankind, ”the MD added. He said PBM would also help TWS in establishing new blood bank and medication of the patients.

The speakers told the audience that there were about 100,000 thalassemia patients in Pakistan while about eight million people were carriers of inactive virus and they all are in dire need of fresh and healthy blood.

Dr Jamal Nasir said the thalassemia patients deserved special attention of the society, especially the philanthropists.

Gen Fahim said awareness was being created among the masses about deadly syndrome of thalassemia.

“There are about 80,000 patients who are getting healthcare facilities and medication under TWS but it is very alarming that each year some 60,000 patients are adding to this number. The therapy of this silent killer is much costly which also needs more and more contributions and donation of blood,” he said.

Bile said Pakistanis were the most enthusiastic nation in the whole world to help others.

On this occasion, the thalassemia patients performed tableaus, dramas, skits and colourful dress show. At the end, prizes were also distributed among them.

Plan to make Kolkata thalassemia-free by 2015

May 15, 2010

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A Kolkata-based cancer research institute announced here on Friday the launch of a campaign that would entail blood testing and counselling of about 2.6 lakh school and college students over the next five years, with a view to spreading awareness about thalassemia among them as part of its attempts to eradicate the disease from the city by 2015 Titled “Zero Thalassemia Growth Rate in Kolkata by year 2015,” the project is supported by the Kolkata Police, the Rotary Club and the Medical Bank and was kicked off on Saturday — World Thalassemia Day.

Ashish Mukhopadhyay, medical director of the Netaji Subhas Chandra Bose Cancer Research Institute, says about 10 per cent of the city’s population are thalassemia carriers and the number can multiply in geometric progression unless marriage between two carriers is prevented.

Man donates blood 98 times in 20yrs

May 15, 2010

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PESHAWAR: 38-year-old Sohail Anjum has donated his blood to Thalassemia children 98 times in a span of 20 years.

The resident of Peshawar works as a plumber in a government organisation in Peshawar.

Anjum donated his blood for the first time at the age of 17, and from then on has been giving blood every year.

He said he is a poor man, and with little money to give as alms and Zakat, he donates blood instead.

Sohail said he feels completely healthy, and is aiming for a century of his blood donations.

Call To Adolescent Males To Undergo Thalassaemia Screening

May 15, 2010

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KUALA LUMPUR, May 8 (Bernama) — Adolescents, especially males have been advised to undergo screening for thalassaemia, an inherited blood disorders that affect the body’s ability to create red blood cells.

Health Minister Datuk Seri Liow Tiong Lai said awareness of the disease among males was still low as they accounted for only 20 per cent of 206,390 people who underwent screening last year.

He said 29,326 people took the thalassaemia test in 2008 and the figure grew to 206,390 last year.

“I appeal and encourage more young people, especially males to take the test as it only need to be done once in a lifetime,” he said when opening the International Thalassemia Day celebration with the theme “Thalassemia: Knowledge is Strength” here on Saturday.

His text of speech was read by Health deputy director-general Datuk Dr Hasan Abdul Rahman.

Liow said adolescence and early adulthood was the most suitable stage to undergo the test as intervention counselling was more effective at a young age.

He said a thalassemia prevention programme can be done at several selected hospitals, especially those that provide thalassaemia treatment as well as 345 health clinics equipped with laboratory equipments to carry out thalassaemia gene carriers screening.

According to the National Thalassaemia Register, to date 4,768 thalassaemia patients have been registered compared to about 2,500 people in 2004.

Liow said at least one out of 20 people in the country was a thalassemia carrier or approximately 600,000 per a million population.

Patients suffering from thalassemia are required regular blood transfusions. Thalassaemia carriers do not show any signs of abnormalities or health problems.

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