Mrs. Asma al-Assad visits Thalassemia Centers in Nicosia

November 23, 2010


Nicosia, Cyprus- Mrs. Asma al-Assad, accompanied by the Cypriot First Lady Mrs. Elsie Christofias, visited on Friday the Handicraft Center in Nicosia, built with the aim of preserving and introducing the traditional culture of Cyprus.

Mrs. al-Assad and Mrs. Christofias toured the Center and were briefed by those in charge of the Center on its parts which include experimental workshops in the fields of embroidery, knitting and handwork in wood, metal and pottery, among other handicrafts.

There are also workshops for training those willing to learn the crafts.

The Handicraft Center in Nicosia is affiliated to the Cypriot Ministry of Commerce, Industry and Tourism. Its products attract thousands of tourists annually from inside and outside Cyprus, given that handicrafts are based to a great extent on the traditional folkloric art of Cyprus.

Mrs. al-Assad, also accompanied by Mrs. Christofias, visited on Thursday the Thalassemia International Federation (TIF) headquarters and Thalassemia Center at Makarios Hospital in Nicosia, where she inspected Cyprus pioneering experience in combating this disease.

Cyprus has succeeded in stopping Thalassemia disease as no new cases have been recorded for 15 years now. This was accomplished in cooperation between the governmental parties in Cyprus and the civil society, together with the TIF through applying a policy of performing early detection and medical check ups and intensifying awareness raising programs.

By so doing, Cyprus has joined the other countries which rely on prevention as a certain way to stop the spread of the disease, since prevention costs much less than treatment, in addition to the fact that it contributes to preserving the health of the individuals, which enables them to better play their role in the national development programs.

During the visit, discussion revolved around the possibility of availing from the Cypriot experience in this regard and transferring it to the health sector in Syria, especially in terms of setting up an effective prevention program that contributes to stopping the appearance of new cases of the disease in Syria.

Cooperation may also include laying down the appropriate foundations for cooperation between the governmental parties and the civil organizations concerned in the health issue, in addition to exchanging experience and expertise about diagnosis and treatment methods and intensifying efforts in the field of early detection.

During their meeting with Mrs. al-Assad, TIF President Panos Englezos, TIF Executive Director Androulla Eleftheriou and the Cypriot Minister of Health Christos Patsalides expressed readiness to utilize the expertise they have to work with their Syrian counterparts with the aim of setting up a special prevention strategy for Syria to help in gradually reducing the number of thalassemia patients which reaches 7500 toward finally getting rid of the disease for good.

Syria is working to stop the increase of the number of Thalassemia patients through getting the policy of conducting pre-marriage medical tests applied all across Syria and constantly supporting the current patients, as well as further activating the programs aimed at raising awareness of the disease and its prevention mechanism.

It is also working to support the religious, social and civil parties and centers concerned in the issue.

There are two Thalassemia centers in Damascus and Aleppo and a Thalassemia unit in each of the Syrian provinces.

Work is now underway to establish a new center in Raqqa city to cover the eastern region specialized in detection and diagnosis through using the latest technologies based on molecular biology and detecting DNA mutations related to genetic blood diseases including Thalassemia and sickle cell anemia.

Syria has adopted pre-marriage medical checkups through performing hemoglobin test to make sure that the couples do not have Thalassemia.

By the beginning of 2011, a survey will be launched for pre-marriage age categories to know about the number of thalassemia disease carriers.

The Thalassemia International Federation was established in 1986 with the aim of enhancing the national programs seeking for effective and productive prevention and providing appropriate care for Thalassemia patients across the world.

Umang’s Workshop on Thalassemia

November 23, 2010


Shimla. A little fragile frame asks slowly, “Doctor Uncle, can I ever live a normal life? My parents are always worried about me.” One can not believe that Pranjal, who seems to be much less than his age, is eight years old. Aditi looks like a student of 4th or 5th class is a 16 years old girl. She asks, “My growth has completely stopped. What should I do?” These were some of the questions raised by children in Thalassemia Awareness Workshop organized by Umang Foundation; a public welfare trust, in Shimla. Dr. Joseph John, Head, Department of Clinical Hematology and Bone Marrow Transplant at Christian Medical College, Ludhiana was the main recourse person in the programme. Dr. Navin Kakkar of CMC also addressed the children with Thalassemia and their parents. The workshop was supported by Pfizer Limited. Thalassemic children from Shimla and surrounding areas participated in the workshop.

Dr. Joseph John, a renowned expert, said that pre- marriage Thalassemia detection test can check the spread of the disease. He said, about one hundred thousand children with Thalassemia major are born in the world every year out of which 10 to 12 thousand are born in India. This is a genetic blood disorder of very serious nature and patients with Thalassemia major have to survive on regular blood transfusions whole life. The medicines of the disease are also very expensive. He said that Umang Foundation was doing a commendable job in making people aware and supporting the children with Thalassemia.

In his presentation, Dr. Joseph emphasized on the preventive measures and gave an example of Cyprus where Thalassemia had been eradicated through law. He said, “In that country, it is mandatory to show Thalassemia negative certificate in the Church or court to get marriage registered. But in India, it could be done through persuasion as only law can not yield result in such a huge population.” This disease is more prevalent in the northern region including Punjab, Rajasthan, J & K, Haryana, Delhi and West Bengal and Assam, he informed.
According to him, lone substitute of regular blood transfusion for Thalassemic patients is bone marrow transplant. The ideal age for this transplant is between 2 to 8 years and beyond this age, the risk factor goes up. But the cost of such transplant is very high. A patient has to spent any where between Rs. 10 Lac and 15 Lac or more in some complicated cases in India and between Rs.2 to 4 cror in the United States. He said, “One time expenditure on transplant is cheaper than to maintain patient on transfusion and medicine for the whole life. To support the Thalassemic patients who come to CMC Ludhiana for transplant, the Tata Trust has initiated a subsidy of Rs. 3 Lac for the next one year and the patients can get a support two Lac from the Prime Minister Relief Fund. In such cases, success rate is 60 to 80 percent in our country.”

Dr. Navin Kakkar said that if the Thalassemia detection test is not conducted before marriage, the pregnant mother must go for Thalassemia test of fetus in the first three months of the pregnancy. If the test is positive for Thalassemia major, the medical termination of pregnancy could be an option. Both the experts addressed the queries of the patients and their parents

In the beginning, Ajai Srivastava, Chairman of Umang Foundation, while welcoming the guests said that his public welfare trust is the only representative body of children with Thalassemia. He said that during the year 2009, Umang Foundation donated as many as 700 units of blood to the Indira Gandhi Medical College and Deendayal Upadhyaya Hospital in Shimla through camps and emergency donors. This year, till 22nd October, it has been able to donate 675 units of blood to Shimla based hospitals and would achieve the target of donating 1000 units of blood by the year end. According to him, now the Foundation has started supporting the economically weak children with Thalassemia by providing them with medicines. Apart from this, the Foundation is fighting with the government agencies for blood safety and scientific blood banking system in the state.

Yashwant Rai, General Secretary of Umang Foundation informed that next year a state level workshop would be organized in Shimla. He said that the Foundation is conducting small workshops to sensitize the masses about Thalassemia and the problems of the Thalassemic children. In the last, Dr. Joseph John presented gifts to the children with Thalassemia. Kulbir Bhatia, representative of Pfizer Limited, said that his organization would like to support the cause in future also.

First bone marrow transplant performed in Nashik

November 23, 2010


The city’s first bone marrow transplant has been performed successfully in the district by a leading haematologist on a woman.Bone marrow transplant is a complex procedure like Kidney and liver transplantation and is a boon for patients suffering from various diseases like Thalassemia, Blood Cancer, Myeloma and Lymphomo, Dr Pritesh Junagade, who is also haemato-oncologist, told reporters last night.”The 21-year-old woman from Sangamner, who underwent the procedure, had a plastic anaemia and she needed regular blood and platelet transfusion to keep her alive. Her brother was tested to see if his bone marrow matched. It did and the marrow was removed from the donor and placed in the patient,” he said adding four weeks later, the patients blood count was normal.Dr Junagade, who was in London for seven years and returned to Nashik, said the transplant was carried out successfully at the cost of Rs 5.5 lakh.

Italian docs bring Thalassaemia cure

November 23, 2010


It’s a ray of hope for Thalassaemia patients, particularly so for those who cannot afford expensive treatment. The city will soon have a “Bone Marrow Transplantation” unit (BMT) set up by a pioneer team of doctors from Instituto Mediterraneo di ematologia (IME), Italy. The department is headed by Prof Guido Lucarelli, a renowned transplant physician for Thalassaemia.

‘Cure Thalassemia India’, will be a not-for-profit organisation providing support to health professionals working for the cause of children affected by Thalassaemia, said Eugenio La Mesa one of the organizers for BMT centre and a social business entrepreneur.

Currently BMT is the only curative option for this fatal inherent blood disorder. Usually a patient requires life-long blood transfusion every three to four weeks, in addition to medicines, failing which 90 percent of the children affected by the disease die in early childhood.

The team from Italy is in Hyderabad and has visited hospitals in the city to finalize the hospital for the BMT unit. Once the finalisation has been done, a specialist team from IME will train the local doctors and nurses in this treatment. The treatment includes transplantation for 100 per cent and 50 per cent HLA (human leukocyte antigen) matched donors, said Dr Pietro Rodani, transplants specialist from Rome.

There are 1400 Thalassaemia patients registered with the AP Thalassaemia Society. If they have a chance of undergoing BMT, chances of their recovery will be high, says Chandarakant Agarwal, who is responsible for discussing the possibility of establishing the BMT centre here and whose daughter is also a thalassemic patient.

“A unit supported by them in Pakistan has completed 35 bone marrow tranplantations for Thalassaemia.
It has been two years since the tranplantation and the children treated under their protocol are completely cured of the disease and are now healthy. All procedures were performed by Pakistan’s team of doctors trained under them,” Chandrakant said.Parents of children suffering from Thalassaemia were present.

BMT Centre To Come Up In City

November 23, 2010


Patients suffering from thallassemia will soon be able to obtain the services of a Centre for Bone Marrow Transplant in the city itself.

A team of doctors from Italy are currently in the city, to find the best possible hospital to set up the BMT unit.

Doctor Pietro Sodani told media persons that he and his team will, under the aegis of ‘Cure Thallassemina India’, a non-profit, non-political and secular organisation providing support to health professionals in developing countries, will finalise the hospital after going through the various corporate hospitals in the city.

Dr. Pietro revealed that very few centres for BMT exist in India, and that the city will soon join other cities like Vellore, Bangalore and Delhi after one is set up here.

He also revealed that the BMT Centre will provide relief to about 1,400 known thallassemia patients in the State.

Thalassemia Major is a fatal blood disorder which not only destroys red blood cells but also produces defective red blood cells. It requires life-long blood transfusion, every 3 to 4 weeks, and medicines, failing which 90% of children afflicted by it would die in childhood. BMT is the only known cure.


November 17, 2010
This couldn't have been possible without your support!

This couldn't have been possible without your support!

With you guys support and votes we have won both the categories, that is.. as Best Website and as Best Blog 🙂

What were the awards for? and why?

SEPLAA Foundation is a non-profit and a-political think tank which performs as an activist organization to:

  • Do research, create awareness and facilitate improvements in the areas of health, environment, society, education, empowerment and law.
  • Build the positive image of Pakistan globally through its social media channels and international networks.

It was initially established as a privately funded organization in Lahore, Pakistan in February 2009 as the Seeds of Education, Policy & Legal Awareness Association (SEPLAA).

SEPLAA was later registered as the SEPLAA Foundation in April 2010 under the Societies Registration Act 1860 (Act XXI of 1860) with a specified Memorandum of Association, to work in the areas of health, environment and socio legal reform through awareness publications and dialogues.

SEPLAA arranged Talent of Pakistan, mega event for 2 days, which included Conference on 13th November, on Theme : Hope of Pakistan: Innovation, Creativity & Skills Enhancement & Talent of Pakistan Awards.

SEPLAA aims to show positive side of Pakistan and hence this was an outcome 🙂

On 14th November they arranged an exhibition, from Conference to exhibition everything went smooth.

SEPLAA Fan Page on Facebook :

Event Pictures :

I contribute, do you?

November 1, 2010

Hello everyone,

We are creating a pool of donors who can contribute monthly for needy patients of Thalassemia & for our Fight Against Thalassemia campaigns, If any of you are interested to become a donor, let me know.

Our plan is to gather donors then according to the monthly contribution we will be sponsoring few non affording Thalassemia patients. And rest of the contribution would be used in our campaigns (blood camps, screening camps & awareness seminars).

You can even donate 100RS, interested people please drop in your email id and you will be added to our pool of donors.

To contribute there are three options, (1) PayPal (2) Bank transfer (3) Personally handing over! 🙂

-Ayesha Mehmood
Official Spokesperson

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