May 8 is World Thalassemia Day. This day is celebrated by thalassemia organizations around the world, and gives them an opportunity to increase awareness about this important genetic disease.

We publish some articles about the Thalassemia Day Conference held in Karachi, Pakistan, and some pictures taken by Dr Sadaf Khalid, our Pakistani branch coordinator.

Need for thalassaemia prevention stressed

By Khursheed Hyder

KARACHI, May 8: As Mohammad Iqbal talked about his son Kashif Iqbal, who died of thalassaemia some years back, there wasn’t a dry eye in the house. The man behind the Kashif Iqbal Thalassaemia Care Centre (KITCC) explained how he ran from pillar to post in Pakistan and abroad for his son’s treatment, but could not save him. After his son’s death he decided to help children who had this disease and set up the centre.

The thalassaemia conference, which was arranged by the KITCC in collaboration with Jiba’s Karachi chapter (ladies wing), was held on Thursday to commemorate International Thalassaemia Day at the Federation House. Observed on May 8 each year, the day is held to bring about awareness of the disease among people throughout the world.

Chief guest Saifuddin Zhoomkawala said that prevention was better than the cure, and couples should get their blood tested before marrying. “I feel small in front of these people who are doing so much for this cause,” he observed.

Jiba, along with the KITCC, visits various schools and conducts blood tests for the detection of thalassaemia minor on a regular basis.

“The alarming fact is that approximately seven per cent of the students are detected with thalassaemia minor during the tests,” said the chairperson of Jiba, Maleeha Bhimjee. “As treatment is very expensive, awareness of the disease is essential to prevent its increase,” said Mr Iqbal.

Every year, about 6,000-7,000 children are born with thalassaemia major in Pakistan, while five to six per cent of the total population is thalassaemia minor. This great number is due to lack of awareness as well as the lack of means for testing the disease among the poor.

A genetically inherited disease passed on from parents to their children, thalassaemia major requires blood transfusion every 15-20 days for the affected children to survive. The life expectancy of a child suffering from this disease is between 5-18 years depending on the treatment. Due to regular blood transfusions, complications tend to develop, which include excessive iron in the body. To clear the body of this excessive iron, regular iron-chelation therapy is needed side by side with blood transfusions.

Thalassaemia affects the red blood cells. Due to this, red blood cells are easy prey to mechanical injuries and die easily, thus regular blood transfusions are needed. The spread of the disease occurs when two minors with thalassaemia get married and have children, who then are at great risk of being thalassaemia major or minor themselves.

8m suffer from thalassaemia in Pakistan

By Ashfaq Yusufzai

PESHAWAR, May 7: As the medical community is going to organise ceremonies to mark the World Thalassaemia Day on Thursday, the number of children afflicted with the killer ailment is soaring due to the non-availability of treatment facilities at the state-run health institutions.

Pakistan, being signatory to the United Nations’ Child Rights Conventions has terribly failed to protect the children against diseases. Thalassaemia is the most prevalent inherited blood disorder among children and according to paediatrician, an estimated eight million are believed to be suffering from it countrywide.

The affected children have less chances of survival because they consume blood so speedily that initially they need blood transfusion every three months, then every two months and then on weekly basis. Due to non-availability of blood and lack of blood donation culture, the children often end up at the privately-run blood transfusion centres, which cause them hepatitis and other killer ailments.

Experts suggest measures to put brakes on the disease. Avoidance of intra-family marriages is one of the reasons needed to be tackled through awareness and legislation. Iran, Saudi Arabia, Malaysia, Egypt and India are among the few countries that have controlled the disease through legislation and public awareness.

In the UK, the number of thalassaemia patients is only 300, while in Italy no thalassaemia child has been born over the past 10 years. Same is true for other developed countries.

The longest surviving patient in Pakistan, who lived for 27 years in the province, was the brother of a doctor, who took extreme care of him, but ultimately he died. For other children, the situation is extremely dangerous because they couldn’t celebrate their fifth birth anniversaries.

The only treatment available for such children is the bone marrow transplantation, which cost about Rs1.5million. Note that the children are required to receive subsequent treatment that cost Rs20,000 a month.