On the World Thalassemia Day

I want to wish the little kids with thalassemia a happy day and I want to mean it too.

Today is the world thalassemia day. All over the world organisations and individuals are celebrating this occasion. It did occur to me that having been involved with thalassemia for 2 years now - maybe we too should celebrate this day.

Two years back when I walked across a ward in the Government hospital taking care of children with thalassemia, I was horrified. I came face to face with little children who were destined to keep coming back to the hospital every few days throughout their life. I saw hopelessly poor people struggling to get sufficient money and time to organise for blood for  their children. I saw parents running from pillar to post to organise for each unit of blood. I saw complications, enlarged heads, deformed bones, clear signs of the little bodies withering away. It was an appalling site - which brings in hopelessness and helplessness. For a moment it appeared to me that the disease had led these children to un-avoidable misery and pain - for a lifetime. I was wrong!

I came back and started Googling to find out what is happening elsewhere. I found experts all over the world and spoke to them. I realised that it was not destiny, nor was it something too difficult to handle - it was simply the case of inappropriate management, inadequate care and apathy from the society. 

Thalassemia is not a disease - it is a disorder. There are numerous examples of people who live a normal life with this disorder. There is an IAS officer - Mr Sukhsohit Singh, who is a thalassemia major. In several countries nobody dies because of thalassemia anymore. Even in some cities in our country, inspite of thalassemia, children suffering from the disorder has a bright future.

If I was to put it in simple terms, the world of knowledge about thalassemia told me:

  1. We must regularly transfuse blood to these children. The families should not have to that worry about organising for blood or paying for it.
  2. We must ensure that proper medicines are regularly given to these kids to remove the accumulated iron from their bodies. This harmful iron is the root of most complications.
  3. We must periodically conduct routine investigations and tests to prevent any complications.

If we do these things right, then each one of these children would grow up to be contributing members of the society.Blood, drugs and tests - all are available. It is a matter of making these accessible to these children.

In Karnataka, statistics told me that most children with thalassemia won’t live to celebrate their 18th birthday. We as a society have failed to do what is right - give them the most fundamental of all rights - the right to live!

We started a daycare centre in November 2011 to fix this problem. Within a few months things started to get right. Today 200 children benefit from this facility. Blood, medicines and tests - everything organised for these children. We are happy about what has happened. We are immensely proud of being associated with Indira Gandhi Institute of Child Health and Applied Materials who made this happen. 

However, I do not feel like celebrating today. After knowing all of this, after having time and again tested and verified the right approach, it is hard for me to understand and accept why at least 300 more kids suffering from thalassemia (who are not part of this centre and who are  not receiving proper care and management) - the poorest of poor - those who suffer the most - still do not have access to care and management! While we are happy about what has been done , suffering, denial and pain of these 300+ children is too much to ignore. Something needs to be done before it is too late.

I want to wish these children a happy day - all 365 days - and I want to mean it too!

- A Sankalp Volunteer

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