Fighting For The Red In The Blood

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Thalassemia – a bloody curse

(Please spend five minutes reading this simple article. It may save your child from lifetime of misery.)

Blood is vital for life’s sustenance. But what if your very own blood becomes the curse of your life?

That’s what happens in the disorder called Thalassemia.

Thalassemia is a hereditary disorder that causes shortage of red blood cells in the body of the patients. (The Thalassemia gene can lie dormant for generations. So even you might have it without knowing it). The patients of Thalassemia have to survive by getting regular blood transfusions. Most patients need the blood transfusion monthly or twice in a month.

But this is just the start of problems for Thalassemics.

Thalassemics are always at risk of acquiring infections like HIV, Hepatitis etc. from infected blood. And the constant anaemia and the repeated blood transfusions lead to an iron overload in the body. This access iron affects all the vital organs and glands of the patients. If left untreated, this iron overload causes stunted growth, organ failure and loss of life. The treatment of iron overload requires expensive iron chelation therapy which consists of taking three to four injections five to six days a week. These injections have to be injected very slowly over a period of eight to twelve hours using a special pump. There are only two or three oral alternatives available for these injections yet. But they are neither as safe, nor as effective as Desferal injections.

So far, the only cure for Thalassemia is Bone Marrow Transplant. BMT is not just very expensive, but very risky too. So very few Thalassemics are lucky enough to benefit from this procedure.

Therefore, it might be said that Thalassemia is 99% incurable.

But THALASSEMIA IS 100% PREVENTABLE.

Before we know how this life crippling disorder can be prevented, let us first see how it is caused. Thalassemia is caused because of a mutation in the genes. This gene mutation is more common in the people who are natives of the Thalassemia belt i.e. Mediterranean countries like Cyprus, Sardinia Greece, middle-east Pakistan, India, Burma and Thailand. In India, it is most common in Sindhis, Punjabis, Gujratis and Bengalis and people who have migrated from West Pakistan.

The Thalassemia gene does no harm to the person who carries it. But when a carrier of this mutated gene mates with another carrier of this mutated gene, the offspring of such parents can acquire the mutation from both of them and become a patient of Thalassemia Major.  People which are carriers of Thalassemia gene are called Thalassemia Minors. If only one of the parents is Thalassemia Minor, then there is no risk of the child being a patient of Thalassemia Major.

But when both parents are Thalassemia Minors, they have 25% chance of having a normal child, 50% chance of having a Thalassemia Minor child and 25% chance of having a Thalassemia Major child. This means that even if your first child is healthy, there is still a risk that your other kids may be born with Thalassemia Major.

The 25% may appear as a low risk in words. But the fact is that about 4.5% population of the world is affected by Thalassemia. In India, about 3.9% people are carriers. 8-10 Thousand children are born with Thalassemia Major every year in India alone. And all these children are cursed for life to suffer almost daily needle pricks.

But, all this can be prevented if only people get themselves tested to find out their Thalassemia status.

Anyone can be a Thalassemeia Minor without knowing it.Thalassemia Minor people are healthy and normal like anyone else. For example, Mr. Amitabh Bachchan is a Thalassemia Minor. Amisha Patel and Ashmit Patel are also Thalassemia Minor. So you can see that Thalassemia Minor are all healthy and normal people. The only way you can know of your Thalassemia status is by getting yourself tested. All it requires are some blood tests that are quite affordable and are carried out by all hospitals and Pathological labs. You can consult any doctor to know more about these tests.

Once you get yourself tested and find that you are a Thalassemia Minor, you can then take an informed decision. If you get married to another Thalassemia carrier, you can still go for antenatal screening to ensure your baby is not a patient of Thalassemia Major.

Thalassemia is a disease that means lifelong suffering for the patient. But you can save your child from this suffering. GET YOURSELF TESTED. Find out your Thalassemia status. Remember, one prick on your arm can save your child of thousand and more pricks. So, again and again I would request you, get yourself tested.

And please spread the awareness about Thalassemia and help us eradicate Thalassemia from the world. This disorder is preventable. Let’s prevent it from spoiling the lives of any more children.

13 Comments

• 

  Jyoti Arora

  30/01/2012 at 11:10 pm

  Welcome, Hemant

  Reply
• 

  Jyoti Arora

  30/01/2012 at 11:10 pm

  Thanks, do help us in spreading the awareness by sharing the knowledge.

  Reply
1. 

   Deboshree

   28/01/2012 at 8:01 pm

   A very informative and useful article Jyoti. I didn’t know much about this disorder but now that I do, I will make it a point to tell more people.

   Reply
   • 

     Jyoti Arora

     30/01/2012 at 11:09 pm

     Thanks, Deboshree. it would be a great help if you join in in our efforts to spread awareness. Even one life saved by our efforts will be a good thing done. Thanks.

     Reply
• 

  Jyoti Arora

  30/01/2012 at 11:07 pm

  Yes, it is true, Thalassemia is a disorder that’s 99% incurable, but 100% preventable. And by spreading awareness is the only way we can prevent it from ruining more lives.

  Reply