Fighting thalassaemia

[Night_Hawk]

The biggest hurdle, according to doctors, is the lack of awareness among people about the disease, frequent inter-family marriages and the hesitancy to get blood screenings done before marriage or at least, before planning to have a baby. PHOTO: FILE


Every year, at least 6,000 children in Pakistan are born with thalassaemia. With over 10 million carriers of this disease in Pakistan, thalassaemia is the most prevalent blood disorder in the country. A thalassaemia patient needs, at least, 12 blood bags a year. The treatment can cost up to Rs2.25 billion annually.

Despite these facts and being one of the most prevalent diseases in Pakistan, the authorities concerned have yet to formulate a health policy to protect people against thalassaemia. While the Sindh Assembly took the lead by passing a Sindh Control and Prevention of Thalassaemia Bill in September 2013, it is too early to say whether the Act would be implemented or be effective, in case it is.

The biggest hurdle, according to doctors, is the lack of awareness among people about the disease, frequent inter-family marriages and the hesitancy to get blood screenings done before marriage or at least, before planning to have a baby.

Several non-governmental organisations have been demanding that the government add a clause in the marriage certificate requiring the bride- and the groom-to-be to give certain information regarding their medical history, as well as that of their families, with a focus on hereditary diseases, including thalassaemia.

The aforesaid Act, too, makes it mandatory for individuals to get blood tests done to check their thalassaemia status before they get married. Through these steps, the government can save thousands of lives every year. In Iran, Saudi Arabia and the UAE it has become necessary for married couples to be screened by law to check if they are thalassaemia carriers. The carrier status is then mentioned on the wedding certificate.

In Pakistan, while there are several private centres for haematological diseases running thalassaemia prevention programmes, they are expensive. The government does not provide any test facilities related to the disease. Steps must be taken immediately to control this disease before the numbers of those affected spiral out of control.
Published in The Express Tribune, January 29[SUP]th[/SUP], 2014.
http://tinyurl.com/muqzaao

 

[Kamboz]

I am married to my cousin and our fourth child had thelasemia. Alhamdulillah my daughter had a Bone marrow transplant and is fully recovered, since we live in the US.
However, we know what we went through and it is a great pain for any parent. Imagine your 4 or 6 month old baby had to go through pricking needles all the time.
I have suggested to all my family members that they avoid cousin marriage , the government should start screening as described in the above article. It is not something to be ignored. Don't wait like to find out late in life......

 

[hawkkhan]

Definitely lack of awareness. it will not make any difference in cousin marriage or not if two cousins marry each other, one have minor and one dont have then the children will have max minor thalassemia , but if you are married out side and both husband and wife have same minor beta or minor alpha thalssaemia then kids will have major one.

yes it will be a good idea to add this condition on nikkah nama.

Also this is a very common blood disorder in south east asia and people should not be ashamed to get there self checked up

 

[Night_Hawk]

5,000 babies born with Thalassemia in Pakistan annually
PPI

KARACHI: More than 5,000 babies are born with Thalassemia disease every year in Pakistan and the disease is creating socio-economic problems for society, Consultant Haematologist Patient Welfare Association ((PWA) of Civil Hospital Karachi (CHK) Dr Humaira Ghous.
She was talking to the media at the 34th Annual General Body Meeting of PWA held at the Dow Medical College, Arag Auditorium on Wednesday.
Chairman Adamjee Enterprises Abdul Wahab Lakhani, CEO Rajby Industries Nafees Sultan, CEO Al-Karam Towels Mehtab Chawla, Tariq Mehmood, Khaliq-ur-Rehman, Tariq Shafi, Siddiq Sheikh, Junaid Shaikha, Shamim Firpo and Shazia Mirza also attended the event.
Dr Humaira said the PWA provided safe blood and medicines to patients suffering from Thalassaemia. She said Thalassemia was a genetic disorder, putting socio-economic burden on the country.
Sometimes arrangement of blood transfusion for Thalassemia patients after every two weeks makes it very difficult for parents. She said the culture of voluntary donation of blood is necessary to save precious lives, she said.
She was of the view that everyone should undergo a Thalassemia test before getting married. Awareness among the public is necessary in order to prevent the coming generation from Thalassaemia disease, she said.
Chief Guest Abdul Wahab Lakhani, while addressing the ceremony, appreciated the hard work of the dedicated PWA volunteers who come forward and dedicate a valuable part of their student lives at Dow Medical College to lend support of the needy patients that while fighting with illness. He said such work should be projected in media as the media can play a big role in creating awareness of such activities among the people.
PWA officials highlighted that in the fiscal year 2012-2013, the association had mobilised a budget of about Rs6 million, which was spent on poor patients. The association has successfully established its own endowment fund and is stepping towards a secure future for millions of poor patients thus require more generous contributions from the empathetic community.
PWA is a non-political, non-government organization voluntarily running by the students of Dow Medical College since 1979 within Civil Hospital Karachi, providing free of charge medical services to the destitute patients of CHK in particular and population of Karachi. They have a free blood bank with an annual output of around 90,000 blood bags, TB and general follow up with over 300 registered patients, Thalassemia services with 275 registered patients, Drug Bank and Diagnostic Lab to the needs of countless patients every day.
CEO Al-Karam Towels Mehtab Chawla also announced donation for PWA on this occasion.
http://tinyurl.com/lx784u6