Changing the Mindset Regarding Survival

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Re: Changing the Mindset Regarding Survival
« Reply #30 on: April 08, 2006, 03:49:11 AM »
You ARE what you want to become. Thal is not an excuse. Sure, there are limitations (can't climb Mt. Everest for one, probably :biggrin) but there is still plenty that you can do.

I fully agree with Supratim.. You are what you want to become and a positive mind can overcome any obstacles.There are any many other people around us with even more serious handicaps and who have been able to put a whole meaning to their lives. So, the first important thing for any parent would be to accept the child's condition and then teach the child to accept his condition and the best way to deal with the situation.
For Thalassaemics in India, things can be difficult, because of the cost. But as Supratim said, there are many charitable organisation, who would help. I remember getting Desferal from Ford Foundation in Pune. And it was not just thrown into my lap. I had to make many many contact and try hard to be able to find this contact.

In Kolkata, the Thal Association is working very very hard and for their fund raisings they have roped in famous personalities like film star Mithun Chakraborty and cricketer Surav Ganguly.Now Mithun Chakraborty is a big donor to the Thal Association of Kolkata.

In India, Thalassaemia to the Govt. is a very very low priority . So we have to do we have to do.

But the first important thing is for the parents to educate themselves about Thalassaemia, learn to deal with Thalassaemia and then accept it. When that is done, half the battle is won.

Shikha Mitra


A very thoughtful post, Andy. I agree this can be a valuable discussion for both younger (maybe, older) thals and equally importantly, parents and families. I will try to share my experiences (what worked, what did not) and thoughts over multiple posts.

During the Pune Conference, George said something that has stayed with me. The main psychological thing that parents have to deal with is GUILT. And, I think what doctors, counsellors and we have to tell (our) parents first is this: This is not your fault. You did not know.  You could not know.

And, this is really the first step. Dealing with Thal requires acceptance of the fact first. If parents are unable to get over the guilt, then that could either lead to molly-coddling of the child or rejection. In India, my experience is that the reaction is usually always the first: molly-coddling. And, wrapping up a Thal child in cotton to protect her from the knocks of the real world is bad, bad, bad for the longer term, in my view. And, I would say this to all young Thals on this group - you must help your parents get over their guilt trip, it is good for them, but great for you. I know I grew up the day when I stopped saying "Why me?"

In India (and maybe elsewhere, too), people have a lot of reliance/belief on "fate" ... and, I see this belief multiplied manifold in Thals/Thal parents. But, this is *crap*, complete, unadulterated, bullshit. Accepting Thal does not mean accepting you have no abilities or no ambition or no *productive* life. Fate has nothing to do with it. You ARE what you want to become. Thal is not an excuse. Sure, there are limitations (can't climb Mt. Everest for one, probably :biggrin) but there is still plenty that you can do.

But,you have to start with small steps: first, getting parents over the guilt trip. And, here I think older thals can play a solid role as counsellors. Second, having access to chelation. I think L1 solved this problem to a large extent in India, although there are still some Thals who have reactions to L1 and cannot afford Desferal.  Third, getting an education. I have seen Thals (ab)using their position not to study, and parents letting them get away with it. Sorry guys, that does not work. If you want to lead a fruitful life, you have to make the effort, too. And, it's never too late to start.

I will come back with more thoughts later, but my key message is this: 90% of what we want to become is up to US. Sure, we need support from govt infrastructure (safe blood, chelation support) and parents (give us room to grow), but we have to do our share of pulling, too. You are what you want to become.

Comments/questions?

Cheers  :bighug






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Offline jzd24

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Re: Changing the Mindset Regarding Survival
« Reply #31 on: April 08, 2006, 11:42:58 PM »
Hi Everyone,
     Speaking of survival, I am curious to know how old people are. I have intermedia and get monthly transfusions, and I seem to be older than most of you. I am going to be 55 next month, and I'm sure there are others with intermedia my age. Are there? I'd like to know.     
     Also, how do you get the little faces to go on your post? If you just click on one, and it says what it is on your post, will it come out as a face when your message comes up? Remember, I'm older and don't know these things!  Love to all, Jean 
 

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Offline Andy Battaglia

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Re: Changing the Mindset Regarding Survival
« Reply #32 on: April 09, 2006, 02:52:43 AM »
Hi Jean,

Yes, just click on the smiley you want to use and it will appear in the spot you left off. If you click more another window opens with even more great smileys. Also, if you click preview before posting you will see exactly what your post will look like and if you're like me, it gives you the chance to correct all the typos.  :lol  You can play around by a doing  post that you don't post and see how all the smileys work by using preview. You don't actually have to post it.

As far as age, the oldest major I know in this group is 47. I don't think Cicci has joined here yet but he is also an intermedia and is in his mid fifties. Since chelation only dates back to the late 70's/early 80's and is an even more recent development in many countries, we are just now seeing the aging of the thal major population and we are all very happy about that!
Andy

All we are saying is give thals a chance.

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Offline Eponine

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Re: Changing the Mindset Regarding Survival
« Reply #33 on: November 30, 2006, 07:40:11 AM »
You ARE what you want to become. Thal is not an excuse. Sure, there are limitations (can't climb Mt. Everest for one, probably :biggrin) but there is still plenty that you can do.

Can we really NOT climb Mt Everest? Why?
« Last Edit: November 30, 2006, 08:04:06 AM by Eponine »

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Offline §ãJ¡Ð ساجد

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Re: Changing the Mindset Regarding Survival
« Reply #34 on: November 30, 2006, 12:26:11 PM »
Hi,

Been there! Done that! (Almost :biggrin)

Take a look at these Thal. kids of Pakistan. They went to the base camp of the second highest mountain of the world "K2"

Check it out!

http://www.thalassaemia.org.pk/event.htm

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

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Offline Eponine

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Re: Changing the Mindset Regarding Survival
« Reply #35 on: November 30, 2006, 05:19:10 PM »
Cool!! Fantastic! Proud of them!!!

 

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