What if you are a Thalassemia Carrier and you don’t know it??

What if you are a Thalassemia Carrier and you don’t know it??

There’s high chance that you wouldn’t know it because you wouldn’t have any symptoms!! You’d probably come to know of it only after it’s too late.............

Every year, parents of 100,000 new born children over the world come to know of this much before their child celebrates his/her first birthday!! Every year, 12,000 such children are born in India. These children suffer from a life threatening inherited blood disorder wherein their body cannot make healthy haemoglobin and they’re dependent on regular red blood cell transfusions (every 15-21 days) throughout life to survive......They’re diagnosed to have a dreaded disease - Thalassemia Major!!

It’s not just that simple! Regular red blood cell transfusions result in a built up of toxic iron in the body which, if left unchecked can damage the vital organs. The drugs to reduce the iron overload are overly expensive and hence, unaffordable for majority of such population. Despite the trauma of regular monthly blood transfusions which start much before a child reaches his/her first birthday, it’s a constant painful struggle for survival with complications which can arise out of infections from blood transfusions, side effects of drugs used to reduce iron overload and damage to vital organs resulting from iron overload. Eventually, despite this constant painful struggle for survival, a person with Thalassemia Major may not live beyond 30-35 years...

The only cure for Thalassemia Major is Bone Marrow Transplant which is not only exorbitantly expensive but also, extremely risky with a high risk of mortality during the procedure, a long term risk of damage to the vital organs(due to the dangerous chemotherapy involved) which could happen any time even years after the transplant and a dangerous threat of increased risk of developing malignancies post transplant any time later in their life. 

Many courageous parents take this unsurmountable risk to give their child a chance to leave thalassemia behind...their braveheart children go through this extraordinarily painful and highly risky procedure mustering extraordinary strength and courage and keeping up their smiles but not everyone makes it through the transplant or years after it...except a few who live with the risks till life lasts...

It is disheartening that India is the Thalassemia capital of the world with 40 million thalassemia carriers and over 1,00,000 thalassemia majors.

The root cause why we have such a alarmingly high number of thalassemia major children born every year is that the parents of such children are ‘not aware’ that they are carriers of thalassemia since they do not have any symptoms and unfortunately, they only come to know this after they get a thalassemia major child.

If a thalassemia carrier man marries a thalassemia carrier woman, there is a 25% chance that their child would be a thalassemia major.

If every individual knows if he/she is a thalassemia carrier, he/she can make an informed decision about marrying someone who is not a thalassemia carrier to avoid having a prospective thalassemia major child. If they still decide to get married, they will be aware that there is a 25% risk that their child can have thalassemia major. They can get it tested during pregnancy and make an informed decision if the child happens to be a thalassemia major.

That’s the cry of every parent whose child is diagnosed with Thalassemia Major – who is either living with thalassemia or lost because of it – PLEASE PLEASE PLEASE STOP IT!!!!! Please stop the pain of your prospective child by getting yourself tested!!!!! It’s absolute helplessness and sheer pain to see your baby’s tiny hands being pricked repeatedly and to know that this is going to go on forever, to see your child going through constant pain and trauma throughout life... It breaks your heart to know that you may lose your child one day.......and it shatters you totally when you face that day one day...

Can we make this cry reverberate to every corner of the world so that we can free our future generations of this avoidable pain and trauma???

All it’d take is a simple blood test – Haemoglobin Electrophoresis!!!!!!

Would you go for it?????

Author: Seema Anand - seema007@gmail.com