Thalassaemia: Better Test yourself and Save Lives

By: Muhammad Ali

About 6,000 new cases of thalassaemia are being added each year in Pakistan. ILLUSTRATION: Raja Taimur Hassan

About 6,000 new cases of thalassaemia are being added each year in Pakistan. ILLUSTRATION: Raja Taimur Hassan

Karachi: Preference is yours! A modest care and a simple health check for Thalassaemia carrier status before getting into wedding lock would save our coming generations from becoming a patient of Thalassaemia major.

Introduction:

Thalassemia is a group of inherited blood disorders that affect the body’s ability to produce hemoglobin and red blood cells. Our red blood cells carry hemoglobin. Hemoglobin, a protein, carries the oxygen we breathe in through our lungs and transports it to the rest of the body. A spongy material inside some of our bones – bone marrow – uses iron that our body takes from food and makes hemoglobin.

The bone marrow of people with Thalassemia does not produce enough healthy hemoglobin or red blood cells, which causes anemia and fatigue, because the body is short of oxygen. In more severe Thalassemia cases, the patient’s organs may be damaged; there is restricted growth, heart failure, liver damage, and even death.

Preference is yours! A modest care and a simple health check for Thalassaemia carrier status before getting into wedding lock would save our coming generations from becoming a patient of Thalassaemia major. Everyone needs to get his self tested before it tests you.

I have seen children who suffered from Thalassaemia have to face a really complicated and hurting life as they always needed blood transfusion, which starts at the age of early months and remains, continues for the rest of their life.

Reasons:

Well we should know what cause this disease. Thalassemia cannot be caught or passed on to another person. The clinical severity of thalassemia varies tremendously depending on the exact nature of the genes that a person inherits. The inheritance pattern is complicated in patients with thalassemia. Because two sets of genes on different chromosomes cooperate to produce hemoglobin. A defect anywhere in this complex can produce thalassemia. Thalassaemia is most common in people whose family origins are Mediterranean or Asian.

In our society where arranged marriages and inter family marriges are normal, telling people your son or daughter is a carrier may be a difficult thing to do. However, several people thought it was better to be open about being a carrier, and say it is important that both potential partners in an arranged marriage should be screened. Many people want their children to know about their carrier status so they could make informed choices but some have their insecurity related to disease and society. If any one of partner will diagnose Thalassaemia minor then no one will marry to their son/daughter. Once the marriage has taken place, it would not be acceptable for the husband and wife to separate if they discovered at that stage they were both carriers.

Some couples who discover after marriage, they are both carriers might choose to have children anyway, and accept them as they are. Some might choose prenatal diagnosis and be willing to consider ending the pregnancy. Others might decide that it was best for them not to have any more children.

Although many people I spoke to were in favor of telling people before arranging a marriage, not everybody will choose to do so. The question of finding out about carrier status before entering a relationship was equally important for many people in society, where it is habitual to choose your own partner. Of course, it may be difficult to ask someone if they are a carrier at the start of a relationship, and people often become involved with each other before discovering that they are both carriers.

In Pakistan

On my research Thalassaemia is increasing in Pakistan at an alarmingly rate, which could be gauged from the fact that at least 6,000 children were born suffering from this deadly disease every year and billions of rupees were being spent on the treatment of Thalassaemia patients. There are around 100,000 children with Thalassaemia in Pakistan on whose treatment we are spending Rs 800 million every month, a little less than Rs10 billion a year. Thalassaemia situation is more critical in rural areas, where 70 per cent of the country’s population largely lacks literacy and health initiatives.

What is the solution?

Treating children with Thalassaemia is one thing, but prevention is something that we need the most as it will save children from being inflicted with the disease in future, thus their population would decrease and our national exchequer will prosper. Government should make it mandatory for marrying couples to go for a test to ascertain Thalassaemia in them. It is the responsibility of institutions, government, teachers, parents and media to create awareness against such marriages

The physician remarked that Pakistan needed an infrastructure to provide test facilities at the district level. The general public also needs to be educated about this deadly disease, and a mass awareness campaign should be launched

A consultant hematologist and transplant physician, Dr Tahir S. Shamsi, says “About 6,000 new cases were added each year to the current tally of 80,000 Thalassaemics in Pakistan.

Pakistan would have a confounding over 200,000 Thalassaemic patients in the next 10 years, the economic burden on society to provide treatment would be approximately Rs4 billion in 2019, while another Rs10 billion would be lost due to the non-productivity of those who brought patients to treatment centers.

According to Dr Shamsi, an investment of only 10 per cent of this expenditure in any consolidated Thalassaemia prevention program can eradicate the disease from the country in 25 years.

The writer is a student of IoBM, Karachi.

 

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About Social and Development log of Pakistan (SDLP)

Social and Development log of Pakistan (SDLP) is an attempt to highlights real public issues, which include social, economic and political issues, and complete policy analysis of that issues having experts opinion and analysis on it. SDLP will raise all public issues on the basis of facts and figures and try to advocate at highest forum which may influence the policy makers and draw their attentions towards real problem. SDLP also welcome to those who want to contribute on our blog at https://developmentpk.wordpress.com/. For that you may send your queries/suggestions/articles etc at rajataimur1@gmail.com. Twitter: https://twitter.com/SDLPak or @rajataimur786 Facebook: https://www.facebook.com/SDLPak
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