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. “””

Gene Carriers Argue against Discrimination

August 15, 2010

Courtesy: english.cri.cn

The second trial of three job applicants who were denied jobs because they carry the thalassemia gene opened on Wednesday, in what is believed to be the country’s first case of job discrimination because of the gene.

The three, surnamed Tang, Xie and Zhou, were denied civil servant jobs by Foshan human resources and social security departments last year because they were diagnosed as thalassemia gene carriers after passing written tests and interviews.

The Chancheng District Court in Foshan, Guangdong province, rejected their appeal after their first trial in early June, claiming that carrying the thalassemia gene is regarded as having a blood disease.

The Foshan Intermediate People’s Court has yet to give a verdict, but is required to do so within two months, according to Huang Yizhi, the trio’s lawyer.

The three applicants did not appear in court on Wednesday.

However, outside the court, some students held banners and slogans to protest job discrimination of thalassemia gene carriers.

“After four years of study, every student should have the same opportunity for jobs,” said a student who declined to be named.

The second trial still focuses on whether thalassemia should be known as a blood disease, according to Huang.

Under the general physical examination standard of civil servant enrollment, applicants will be denied the job if they develop anemia, a condition caused by various mineral and vitamin deficiencies. Symptoms can include fatigue, shortness of breath, dizziness and difficulty concentrating.

“It is unfair to deny them job opportunities since their physical checkup report shows they do not have a blood disease condition,” Huang said.

According to regulations, a man will be diagnosed with thalassemia if his hemoglobin (HGB) is lower than 120 g/L. “But how can they be seen as thalassemia patients? They are only carriers, with HGB higher than the minimum level,” Huang told China Daily.

Some 31 students who were diagnosed as thalassemia gene carriers were refused civil servant jobs by Foshan human resources authorities last year, according to Xie, one of the three plaintiffs.

They were asked by the Foshan personnel department to undergo a physical examination after they passed tests and interviews last April.

Xie also did not pass the physical tests because he is a carrier of the thalassemia gene.

“But the relevant regulation for civil servant jobs does not specify that thalassemia gene carriers cannot pass the physical test,” Xie had said in an earlier interview.

Of the 31 applicants who were denied civil servant jobs, 27 are natives of Guangdong province, which is one of the provinces with the highest rates of thalassemia.

In Guangdong, one in nine people, or about 12 percent of its population, have developed thalassemia, a form of chronic anemia, according to the Guangzhou-based Southern Hospital.

“Thalassemia gene carriers with light symptoms usually do not develop physical signs. In reality, they are no different from others in terms of working and living,” said Li Chunfu, a doctor with the hospital.

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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