Hba2 should be a must before marriage

January 16, 2011

Courtesy: medindia.net
Thalassemia is a deadly genetic disorder in which child gets blood to transfuse every 3-4 weeks for the whole life. Every year 12000 children are born with thalassemia ( we are the largest thalassemia children producer in the world ) and around 50% of them are not able to celebrate their 5th birth day. the main cause behind it is only our ignorance ( dont wait for our governmnent to come forward ).
The easiest way to retard the birth rate of thalassemia children is one has to go for thalassemia screening before the MARRIAGE or the horoscope matching. In this process youth can play a good role , If they insists for the thalassemia screening the birth rate can be easily lowered down. Cyprus is an example where the birth rate is ZERO ( earlier they were top thalassemia children producer in the world ).
Our youths can play and must play the lead role.

Join my mission to make our country “” thalassemia free. “””

Help at Last

July 14, 2010

Courtesy: inquirer.net

Novartis Oncology helps cancer patients have long-term access to life-extending therapies through its Glivec International Patient Assistance Program (GIPAP), one of the most comprehensive and far-reaching cancer patient access programs ever implemented on a global scale.

Since its introduction in 2002, GIPAP has provided the breakthrough treatment Glivec (imatinib) at cost to more than 35,000 cancer patients in more than 80 countries. Glivec is a proven-effective treatment for Philadelphia positive chronic myeloid leukemia (Ph+CML) and gastrointestinal stromal tumor (GIST). GIPAP and the Novartis Oncology Program (NOA) have helped provide Glivec to over 1,400 socially disadvantaged Filipino cancer patients.

From 2006 to 2008 alone, benefits provided by the NOA program to Filipino patients are valued at over P2 billion. This innovative program is being implemented in more than 65 participating centers across the archipelago. Today, GIPAP has evolved into the broader NOA program which continues to serve Filipino patients already enrolled in GIPAP and an additional 120-plus more nationwide.

Another life-saving treatment developed by Novartis Oncology is Exjade (deferasirox). Exjade is used for the treatment of chronic iron overload due to frequent blood transfusions in patients aged six and older with beta thalassemia major. This is an inherited blood disorder that causes severe anemia and bone deformities. Untreated, it can lead to death before the age of 20.

Novartis is exploring ways to increase Filipino patients’ access to thalassemia treatments.

Transplant cures girl of thalassemia

May 15, 2010

Courtesy by: indiatoday.intoday.in

Helena, a two-year-old thalassemia major patient, has become the first person to receive a successful mother-to-daughter bone marrow transplant in the Capital.

The transplantation was performed at the Rajiv Gandhi Cancer Hospital and Research Centre (RGCHRC) on February 10 and the doctors have ruled out complications anymore as more than two months have passed since the procedure.

“She (Helena) showed the usual problems initially but she has no complication now and has been cured of Thalassemia,” said Dr Dinesh Bhurani, a senior consultant (haematology) at the RGCHRC, who did the transplant.

Bone marrow transplant is a rare procedure owing to the difficulty in finding a tissue match. And a parent-to-child transplant is particularly rare as the probability of a tissue match in such cases is a mere three per cent.

Only transplants between siblings show a better probability of tissue match with a one in four, or 25 per cent, chance.

“For a bone marrow transplant to be performed, the human leukocyte antigens, or HLA, in the donor cells must closely match those in the recipient cells. HLA are cell surface proteins. The immune system recognises cells as ‘self ‘ or ‘foreign’ based on these proteins,” said Dr J. S. Arora, the general secretary of National Thalassemia Welfare Society and Federation of Indian Thalassemics.

Dr Gauri Kapoor, a senior consultant (paediatric haemato-oncology), RGCHRC, echoed Arora. “In bone marrow transplantation, the donor’s immune system replaces that of the recipient.

If the tissues don’t match, this new immune system may recognise the recipient’s body as foreign and attack organs and tissues,” she said.

In Helena’s case, although the HLA in her cells didn’t match that of her siblings Raunak and Sanjana, they matched those of her mother Meena Kaur.

Helena, whose father Indra Kumar is employed with a multinational company in Russia, developed health problems when she was one.

She underwent treatment at the Mata Chanan Devi hospital in West Delhi and later at the Deen Dayal Upadhyaya hospital.

Doctors at Deen Dayal hospital told the child’s parents that she would need blood transfusions for life. “She needed blood transfusions every month but then her condition started deteriorating,” Kaur said. Helena had to discontinue schooling as her health deteriorated.

When there was no sign of improvement in Helena’s condition, her parents consulted doctors at the RGCHRC, and they suggested a bone marrow transplant as the last resort and only cure for the condition.

FAiTh – Free Testing!

April 21, 2010
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150,000 thalassemia cases in Pakistan

February 14, 2010

Courtesy by: thenews.com.pk

THERE are over 150,000 thalassemia major cases in Pakistan and the number is growing.

“If two thalassemia minor carriers got married then their children could be born with thalassemia major. Therefore, it is of paramount importance to conduct compulsory blood screening before marriage as one of the basic preventive care,” said Ammara Farooq Malik, President of an NGO, Seeds of Education, Policy & Legal Awareness Association (SEPLAA), while addressing the participants at the launching of a Youth Council and website (www.seplaa.com) to create awareness about SEPLAA’s drive “Save a life, save a generation” at its head office in DHA, Lahore, on Saturday.

Ammara Malik proposed to the government that every person should be tested at least once for thalassemia traits and this information could be put on their identity cards along with their blood type.

She said that camps for diagnosis of thalassemia would be set up in institutions to identify thalassemia minor carriers. She said that Italy and Greece had some of the highest number of cases of thalassemia and those countries had learnt to take care of the problem at the roots by educating their people that thalassemia could be prevented by taking the responsible action of blood testing before getting married. “We need to create awareness about the importance of premarital blood screening to remove the stigma of ‘shame’ or a ‘social taboo’ attached with this practice.

Earlier, a video clip of an 11-year-old thalessemic girl Kiran Ashfaq, who died after the failure of her bone marrow transplant, was also shown to highlight the gravity of the issue.

Besides, Hassan Awais Wyne, Zahra Wyne, Saman Jaffer, Jaffer Mateen, Khurram Zafar and other members and volunteers were also present.

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