SWAT:
Although thalassaemia is spreading fast throughout the world, its rate of prevalence in Pakistan is much higher. There are over 60,000 children suffering from the disease, primarily caused due to lack of awareness.
This was the crux of a seminar held by Wajiha Centre of Thalassaemia (WCT) at Saidu Sharif Hospital on Saturday.
Dr Samina Tufail, a thalassaemia specialist explained that the disease is passed on from parents to children through their genes, adding that blood screening of the potential couple before marriage can drastically reduce the prevalence of the deadly disease.
“Unfortunately, the concept of blood tests is non-existent in our society, which may later prove to be fatal,” she said.
According to WCT Chief Executive Qadar Nawaz, the prevalence of thalassaemia in Malakand division is much higher than other parts of the country, with nearly 7,000 patients out of whom 4,000 belong to Swat.
Nawaz said the centre is currently transfusing blood to eight patients in two shifts every day. “We are working constantly to create more resources to increase our efficiency. Our aim is to eradicate the disease completely by 2020.”
Zaibullah, who lost a son to thalassaemia and has a daughter inflicted with the disease, said he still remembers his son’s pain. “I searched for blood all night but could not find it. When I returned to the hospital, he had died.”
Provincial Minister for Forests Wajid Ali Khan said that the government has issued orders to carry out blood screening before marriage.
Published in The Express Tribune, February 7th, 2012.
COMMENTS (9)
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Also, guys, make sure you dont marry a woman who has diabetes. proof? http://www.bbc.co.uk/news/health-16873489
John B.
1) A blood tests will ascertain whether the partners are carriers (thalassaemic minors). If so, then there is a 25% chance that their offspring will be a thalassaemic major. The test will make them aware of that fact.
2) Should the couple still chose to get married, a post natal test can be carried out to diagnose whether the foetus has thalassaemia major. If positive, then the foetus can be aborted.
3) A fatwa has already been issued that in such a situation an abortion within the first 120 days of pregnancy is not un Islamic.
4) Awareness simply makes it possible for people in this situation to make informed decision. And most people do.
5) Legislation can be used as a last resort for those who chose to remain 'uneducated' about thalassaemia.
There is no conclusive scientific evidence which shows that cousin marriage invariably leads to genetic effects.
If I am to accept the notion that i should not marry a person who has alleles of thalassemia, I should also accept that I should not marry a person (even if they are in love with me) if they have mutations for lets say increased risk of breast cancer. I should not also marry a person if they have mutations which could result in my children reaching short height.
@John B, @PakistaniCanadian :
According to the article, Provincial Minister for Forests Wajid Ali Khan said that the government has issued orders to carry out blood screening for thalassemia before marriage.
The article said nothing about preventing thalassemia carriers from marrying, even if both persons are carriers.
Awareness about the recessive thalassemia gene, and awareness about the probability of two thalassemia carriers producing a child with painful, often fatal, thalassemia, would allow the potential marriage partners to make an informed decision about completing the marriage, and about the possibility of producing a child with thalassemia.
Adult thalassemia carriers should not become “Unmarriageable” , but they should consider marrying someone who is not a thalassemia carrier.
Perhaps the blood screening for thalassemia should be carried out long before marriageable age to allow more time for planning marriages.
I agree with Afaaq , don't mention the US, but stick to the science of genetics for recessive traits.
I truly hope that this effort is successful so that future generations of children do not have to suffer from this painful disease.
@PakistaniCanadian: Missing the details of the issue. Blood test Vs education: education focuses on how the autosomal recessive gene becomes homozygous by marrying close family members. Rural people easily understand this as they are already aware of genetics in their own way in their animal husbandry practices.
Blood test for genetic disorder before marriage is screening before procreation, which is essentially eugenics. Why stop here, why not screen for every other genetic disorder? What if the PAK life insurance company starts asking these blood certificate?
There are many solutions to the problems at hand, and screening advice from health care professional is not the solution.
Hope I clarified.
@John B:
Eugenics? Everything that you said would be relevant if the proponents in the article were asking/demanding for laws to be enacted that forced citizens to partake in blood tests. But I don't see any evidence of that in this article. The doctor's advice is specifically to individuals to get themselves tested. It is part of an Awareness campaign, not a call for legislation. So with that in mind, you are already on the same page as the Doctor who is only attempting to educate, and not calling on the government to legislate. Not sure what your tome was all about.
The doctor's advice on blood test before marriage has several ethical and moral issues, and it will fail in its objective.
Today blood test for thalassemia, tomorrow for breast cancer or colon cancer, diabetes and so on and soon we will be doing eugenics and will have a population pool who are "Unmarriageable".
What is needed is education and people are smart enough to understand that.
Who gives the state the right to tell anyone whom they can marry and whom they cannot marry.
I may marry a thalassemia carrier and having known that I am also a thalassemia carrier, I may choose not to have children but live happily ever after, or may choose live the happy life with thalassemia affected spouse as long as it lasts.
Education not legislation is the key in health issues.
The best way to tackle this problem is to create awareness amongst the masses. In Pakistan giving a reason suggesting soley because it is done in the US, is begging for a fatwa from some of our illiterate mullahs and creating more controversies. Majority of marriages in our culture are between related families. Science has proven that inter family marriages in greater numbers increase the amount of recurring diseases making the offspring's more susceptible to certain diseases and disabilities. Married couples possessing higher than normal blood kinship have, on average, an increased chance of sharing genes for recessive traits. Education is the key to save lives ..
First cousin marriages are illegal in several states of US. It's very common in our country, but family members should take care not to inter-marry several generations of first cousins as the risk of genetic disorders is very high in such cases.