Mumbai - January 22nd, 2008

When Nimisha’s cousin Minti asked us whether or not we wanted to spend time with her mother’s brother Vinay, who’s heavily involved with blood donation in Mumbai, we both immediately said yes. What we did not realize was that this man, whom the family seems to affectionately regard as someone lost to a socialist cause, is basically the one-man blood bank organization of Mumbai & one of the more inspiring people I’ve ever met.

Uncle Vinay is the uncle anyone would love to have & his passion for blood donation & active prevention of a fairly prevalent disease here called Thalassaemia is impressive. He took us with him for two days & was constantly fielding calls from people wanting so & so many units of blood at this hospital in one part of Mumbai or that hospital in another part of Mumbai. He said he keeps his phone on at all times and always answers it. It made me think of film people’s obsession with cell phones and always having it on in case of film set issues, and made it seem so much more trivial. I suppose I always expected to have my way of thinking questioned but it’s always funny when you think of what you tend to consider important in one situation vs what someone else considers important in another. The comparison of the ‘We need 2 units of blood immediately’ phone call vs the ‘We just broke our last fishbowl prop & need a new one asap’ phone call is inevitably thought provoking.

On the first day with Uncle Vinay we went with him to an all girls college where he was to give a speech about Thalassaemia. Thalassaemia is a genetic disorder caused by two recessive genes.

{Biology Refresher: Each person has two genes with regard to the disorder. If you have two dominant (A) genes, you do not have Thalassaemia. If you have one dominant (A) & one recessive (a) gene, you have what is known as Thalassaemia Minor, and while you will likely have no symptoms except perhaps slight anaemia, you are a carrier of the disorder. If you have two recessive (a) genes, you have what is known as Thalassaemia Major. Thalassaemia exists mainly in countries from around the Mediterranean and through India/Asia – mainly areas with occurrences of Malaria. It is thought that the defective gene which causes Thalassaemia is such due to a gradual mutation against Malaria.}

Thalassaemia Major is a disease where your blood is not capable of properly transferring oxygen through your body. It is diagnosed by the time a child is approximately 3 months old and for the rest of their (short) lives they will need a blood transfusion approximately every 15 days. Not only that, there will be a severe iron build up caused by the constant blood transfusions which will need to be counteracted on a regular basis.

Apparently something like 40 million people in India are Thalassaemia Minors, which is where the problem lies. Most people don’t know that they are Thalassaemia Minors, and if they marry another Thalassaemia Minor, don’t know that they have a 25% chance of procreating a child with Thalassaemia Major until it’s too late. What Vinay & his foundation are attempting to do is educate & take blood tests from as many people in Mumbai city as they can. They currently target anyone around marriageable age, married & unmarried, by going to local schools & colleges with a seminar one day & blood test clinic the next. Because Vinay is also heavily involved with blood donation, they sometimes combine blood donation drives with Thalassaemia testing, a sort of two-for-one deal!

Evy & I were both very impressed with his presentation at the school (which it turned out later he’d expressly made more in English than in Hindi, just for us). The subject of Thalassaemia is a difficult one here, because it broaches issues from arranged marriage (how do you ask your prospective in-laws if their child is also a Thalassaemia Minor?) to abortion (if you fall in love with another Thalassaemia Minor, there is a prenatal test possible at the 2 month stage to see if your child is a Thalassaemia Major).

After the presentation and a typical installment of feed the guests (they always think we’re hungry – we’re going to be immense by the time we get back!) we went to another school where a blood donation clinic was being held by Vinay’s foundation. Evy & I felt the people there thought we knew more than we did, because once again we were treated as very revered guests. We met the principal of the school & were taken on an extensive tour, it was fun!

In mid-afternoon we stopped for lunch. Vinay wanted to know what we thought about it all & very shortly the three of us fell into discussion about educating people regarding a disorder such as this. It was interesting to be seeing first hand a situation which has occurred throughout the ages.

How does one expand a system that is based on a single person’s interaction with a community? Minti’s Uncle Vinay is a leader, with an appealing quality and engaging speaking style that makes people want to listen to him. He is the founder of this Thalassaemia movement in Mumbai, but it’s getting to the point now where he can no longer do it all himself if he wants to continue expanding, which of course he does. We’ve all had experience with boring lectures, and the last thing he wants is to hand over the reigns of teaching to someone who isn’t going to be able to do it as well as him. He & the foundation are thinking of creating some interactive media or at least video of some sort, but it’s still not the same as having a charismatic person presenting the information in a style suited to the audience of that moment. Dilemmas, dilemmas. Altogether it was a rather mentally invigorating day!