Shikha,
I don't want to flame you, and so, I will try to be as moderate as I can be in my reply.
I think you have this misconception that I am a very lucky, very rich person, and hence, my experiences do not apply to the "real" India. Nothing could be further from the truth. My parents were middle class and did not have loads of money for treatment - but they economised on loads of other stuff and we managed. My father's office did not pay for the blood tx, although it did pay for my splenectomy. I met Dr Agarwal for the first time when I was 15 years old .... so, it is not like he was taking care of me from the start. And, even after that I think I have consulted him maybe once a year, or less. My family doctor was a gem, though .... she took it upon herself to learn as much as she could about thal to treat me - I was her first thal patient. So, I owe her much more than I owe Dr Agarwal. However, from the age of 15-16, I started learning as much as I could about thal, so that I could be as knowledgeable as any doc, at least as far as the main points go. In many ways, I started taking decisions about my own health with the information that I gained. That built up my confidence to take on the external world. Even though I was a thal, I was pretty boisterous ... never shied away from a fight whether physical or verbal at school, then college!!! It's all to do with building up confidence ......
When it was time for work, I did not act "honest", I acted "smart" ..... first, I short listed places of work in my city, so that I could still use my home and home facilities, then i shortlisted firms that did not need a medical test for their jobs (many did not, since they were not providing insurance) and then I started interviewing. I got a job and proved my creds ..... later, it did not matter if i had to take a medical test and told them that i had thal .... i had already proven i could do the job. Why did i not tell my employer that I had thal? (infact most of my employers never knew, and in the final analysis, did not care) My thinking was that there was no potential benefit to me, only potential downside, so what was the point? Ashish, on the other hand, will tell you a different story .... he has always disclosed upfront and has not suffered for it, in fact he has been able to swap his holidays to suit his tx schedule .... so you have two diff approaches, but both with similar end results. Yes, your daughter had a diff result, but I am sure that was a temp setback. Today, you may consider me to be well-off, but this is not because my parents were wealthy, but because I earned it. With the support of my wife and parents, of course. But, I earned it. And, that is the point I was trying to convey. It is important to convey a positive message to all thals in India, even if their current ground reality may be difficult. Because, it may not always be that way ..... Because, we, the thals, can change our reality.
I accept that care is expensive and many can not afford it in India. The solution is to provide financial help. Cipla has done this by making chelation available much more cheaply than before. And, this is the point I was making to some of the TIF India people at the Pune conference .... that, one of the most important, if not the most important, activity for the federation has to be raising money. But, they don't get it. They are still stuck in a time warp. If people in Pune can not afford the cost of care, why don't YOU form a group to help raise money for them? I am sure Shilpa, Simran and all the other thals in Pune will be glad to help you .... why moan that things are not available .... why not do something to make it available? But, even TIF India has a curious frog in the well mentality .... they don't want to explore ... do things differently, and hey, you may just find a solution. When Ashish and I talked about how it is now possible to get hospitalisation insurance in India for thals, at the Pune conference, you saw the response ..... condemnation without enquiry. And, we were stating facts. Imagine what would have happened if we had talked about doing something more adventurous ......
My only exhortation to Indian thals is to dream big and build up your own self esteem. You are living in 2006, not 1976. If I could flourish in the last 30 years, forget just survive, then you have no excuse not to do even better. You can overcome all adversity with support .... and you will get support, if you ask for it, if you demand it ....But, you have to do your bit, too .... not expect to be spoon-fed everything.
Now, re: Hep C - I believe I got infected about 15 yrs back (based on the viral load). Those days the tests were just not available. And, not just here in India, but in the US, too. Don't know whether you are aware, but Lisa had Hep C, too. I wonder how she managed to get infected in this leader of the free world, super rich, great first world country?
Yes, your daughter has got a better life in the US than she had in India, but to use that one example to say that you can not have an equally good quality life in India is wrong. For every example that you can give me a well-adjusted thal in the USA, I will give you one in India, too. [[Rude comment removed by author]]
Don't get me wrong ... I think you went through a lot of trauma, and I am not belittling that. But, a lot of us went through that, too, and are now better, stronger people for it. Sure, lots of our friends did not make it, but it was harder then. It is easier now. And, if we could do it then, every single thal can do it today. And, that is the cause for my optimism.
Cheers