Thalassemia patients appeal for financial assistance

Courtesy by: Daily Times

By Zakir Hassnain

PESHAWAR: With her eyes filled with tears, 11-year-old Fatima, a thalassemia patient, said her elder sister Samina was also a thalassemia patient and died of the same disease, leaving sweet memories behind with the family remembers.

Fatima and her younger sister Aiman came to Peshawar Press Club on Wednesday along with their parents to create awareness among people about this lethal disease and appealed to the provincial government to give financial assistance to Hamza Foundation she was getting treatment from.

A sizeable number of children and their parents who assembled at the press club, also appealed to donor organisations and philanthropists to come forward and save lives of thousands of children suffering from thalassemia.

“Samina died two months ago of thalassemia when she was 18,” Fatima told Daily Times with tears trickling down her cheeks. Fatima, a class 5 student, said Samina had done a nursing course and was voluntarily working for Hamza Foundation. “We all miss her,” she said sobbing.

Wakil Jan, father of Shah Masood, 6, and Hamaad Khan,3, said Masood and Hamaad were thalassemia patients by birth. “I bring them to Peshawar from village after every 2/3 weeks for blood transfusion,” he said.

Muhammad Wali Khan, a father who had come from Malakand, said his wife was his cousin and that was possibly the reason that Haizar Ali, 9 months, and Haizar’s two sisters Anita and Shawaal were thalassemia patients.

“Blood transfusion takes place every 15/20 days at the Foundation in Peshawar,” he said. Wali said if the Hamza Foundation ran out of funds and it closed down, the lives of their children could be in danger.

Thalassemia is a killer disease in which a child suffering from it cannot survive unless he gets blood transfusion after every 15/20 days.

According to an estimate, around 5,000 children are born with thalassemia in Pakistan, mostly in the NWFP.

Ali Gul, who was representing parents and whose two sons were thalassemia patients, said Hamza Foundation was the only welfare organisation in the province that was looking after these unfortunate children. “The Foundation is getting no financial support from the government and is running on donations,” said Gul. Gul who also works for the Foundation, said the Foundation had 525 registered patients and was spending around Rs 400,000 to 500,000 per month on their blood transfusion and other expenditures.

“We, the parents of children, are here today to draw the attention of the government, donor organisations and philanthropists that if the Foundation closes down because of lack of funds or any other reason, our children will die,” said Ali Gul.

Quite a lot of mothers in burqas were present in the press club hall. Some were holding their newborn babies suffering from the deadly disease. Small children holding placards inscribed with slogans of financial assistance posed for photojournalists and the electronic media.

UAE To Make Medical Tests Mandatory For School Students

Courtesy by: Bernama

ABU DHABI, Nov 12 (Bernama) — The United Arab Emirates (UAE) government will make medical tests mandatory for students during their enrollment process in schools, the Emirates news agency (WAM) quoted a local newspaper Khaleej Times as reporting on Wednesday.

The mandatory tests, which will include blood and urine tests, are part of the Health Ministry’s school health program to detect and prevent diseases among children at an early age, said the report.

The ministry’s decision to make the tests mandatory firstly in public schools results from the fact that diseases such as anaemia, diabetes and thalassemia go undetected for years until they become full-blown cases, Fawzia Al Jaziri, a senior official with the ministry, was quoted as saying.

The official added that “the tests will be conducted during the time of admission among children of kindergarten 1, again when the child enters grade 5 and finally in grade 9.”

According to the official, the tests will be handled by the school doctor or nurse.

If a serious case is detected, it will be forwarded to a primary healthcare center while the school doctor or the nurse will be required to maintain a regular follow-up with the parents regarding proper treatment and medicine for the student.

The schools will be required to train teachers to deal adequately with such children.

Thalassemia centres in the pipeline

Courtesy By: Daily Times

By Tanveer Sher

KARACHI: The Sindh Health Department plans to launch an awareness campaign against thalassemia, a blood disorder. The plan to establish thalassemia centres, under a public- private partnership, in Larkana, Nawabshah, Khairpur and Mitthi is in the pipeline.

This was announced by Sindh Health Secretary Mohammad Hussain Syed on Thursday, in his address at the concluding session of the 5th National Thalassemia Conference, organised by the Pakistan Thalassemia Federation (PTF) and the Sindh Health Department.

Eminent haematologist Dr Tahir Shamsi highlighted the media’s role in spreading awareness among the masses about thalassemia and its economic strain on the affected families.

‘Thalassaemia test should be made mandatory before marriage’

Courtesy by: The News

Tuesday, November 04, 2008
By our correspondent

The government was urged to pass legislation to make thalassaemia testing mandatory prior to marriage and launch a campaign against this disease similar to those against polio and TB, as more than 5,000 babies are born with thalassaemia each year in the country.

The authorities were also urged to establish thalassaemia diagnosis centres across the country. Speaking at a press conference at the Karachi Press Club on Monday, Dr Sarfraz Hussain Jafri, Vice President, Thalassaemia Federation of Pakistan (TFP) said blood collection for these patients is the biggest challenge as they die if blood is not supplied regularly. He said prevention of this disease is easy, provided a test is conducted prior to marriage. He said treatment cost of thalassaemia is around Rs56, 000 each year per patient.

Jafri said there are around 70, 000 registered children suffering from thalassaemia out of which 4, 000 are from Sindh. He said each child requires two bottles of blood per month. He added around 2.6 million blood bottles are needed in the country while blood availability is around 1.4 million at present. He said a bill is pending before parliament for passing legislation for a test prior to marriage and urged the government to pass the law.

Moreover, he said there are certain communities in Karachi, which ensure thalassaemia test prior to marriage. He said around 25pc population of Cyprus was suffering from thalassaemia but after introduction of preventive measures, its ratio has been reduced to 0.1pc. Similarly, he said Iran had also initiated preventive measures such as conducting tests. As a result, only 130 children are suffering from thalassaemia there. He said there is a family in Malir of which 23 children are suffering from thalassaemia.

Dr. Zahid Hasan Ansari, head Sindh Blood Transfusion Authority said that seven blood centres are being established in Sindh with the help of German government and a German Bank to ensure safe blood transfusion. Out of which, three blood centres will be set up in Karachi. Jafri said that this project will be completed by 2011.

Furthermore, Jafri said that a two-day 5th thalassaemia conference will be inaugurated in the city on Tuesday (today) in which experts will present their papers.

Meanwhile, Mohammed Iqbal of Kashif Iqbal Thalassaemia centre said around 600 blood bottles are needed in Karachi every day. He said Mufti Rafi Osmani and Iranian scholars have issued Fatwa (religious edict) for terminating pregnancy if test proved that baby has infected with thalassaemia.

Obaid Hashmi of Omair Sana Welfare Foundation said with blood transfusion, iron level among children increases, which required ‘Iron Chelator’ to take out extra iron from body. But it is an expensive treatment, which cost Rs1, 80,000.

I wish government pay attention to it…!!!!