Changing the Mindset Regarding Survival

Over the past 25 years, there has been a revolution in the treatment of thalassemia. The development of iron chelating drugs has completely changed the outlook for survival of thalassemics, and with the promise of oral drugs now being realized, both the quality and length of life have been greatly improved. Thalassemia has become a manageable condition and the prospects for a fairly normal life have never been better. However, as treatment has made significant advances, the change in the mindset that people hold about the long term survival of thalassemics has not always kept pace. In many countries, the era of chelation is so recent that the mindset has changed little, if at all.

Over the past few years, I have had the opportunity to talk to many thals from around the world and the most common concern is not their health, as one might suspect, but rather whether they will be allowed to have a normal life. The older thals all grew up with the belief that they would never live past their early twenties. There were no chelating drugs when they were children and there seemed to be no point in preparing for the future. This same experience has been shared by younger thals in many countries where chelation was introduced much more recently, such as in the Maldives, where the oldest thal is only 25 or so. As chelation became a reality and the lifespan of thals has been greatly increased, this mindset has begun to change, but it changes much faster in the patients than it does in the people around them, including their own families and at times, even their care providers. While the thals may begin to see there is no real reason that they cannot get an education, and have a career and a family, those around them lag in their understanding and acceptance of this potential. Far too many times have I had someone tell me that they have been told they can't work or they can't marry and have children. Often this is exacerbated by cultural and religious factors, where thals, especially women, are not thought of as "marriage material" because of the belief that they can never have children.

These stereotypes about thals persist all over the world but are much worse in some areas. There are many thal moms in places like Australia and in the west, but when I talk to women in many parts of Asia, they are amazed to hear this, and often I learn that they have been told many times that they cannot marry or have kids. This can create much anxiety and depression and an outlook that life holds very little for them.   

I would like to start a discussion about what has been done in some areas and what can be done to change the mindset of both thals and the people in their lives to the realization that thals can indeed have normal lives and can do most of the things everyone else can do in life. Tell us what you have observed in your lifetime. How have things changed and what works at changing people's mindsets? Education is important but that is not always enough when dealing with the cultural issues. How do we educate and how do we succeed in changing things in cultures resistant to change?

This is a huge issue for thals and we welcome all comments about all aspects of this discussion. Everyone, please give us your input. We want to hear your own experience and what you feel works and doesn't work in changing the way people think. How do you change what your parents and doctors believe? How do you succeed in spite of the negative beliefs of those around you? What can you say to other thals to encourage their dreams?

I think this has the potential to be a very valuable discussion. Let's make that happen.

Hi Andy

A very crucial topic picked up by you. The concept of thal managment came to existance only after Chelators were discovered (around 7-8 yrs ago). In the absence of chilators I have witnessed many of my friends die due to Iron overload. You are true that, when we were kidz we did not even thought that we will live more than 25 yrs.

Now as we have chilators available & accesseble (to few), we can thing of managing our health & managing it well. I completed my education & am employed. But still there is a whole lot kidz who do not have these chilators accessible due to financial reasons. I have already started planning a NGO (just a rough Idea) which can raise funds for these kidz & try to provide chilators to such kidz so that they can also have a longer & fulfilling life.

Another thing you discussed is about Thal marriages. I am of the view that If a Thal Major Marries a normal Human still it is for sure that there kidz are gonna have Thal Trait, which will keep the probability of having Thal major down the family chain again. So a Thal either marries another thal or marries a normal human, the best option will be to adopt a normal baby.

Hello Prince,

Well Desferal has been around more than ( 7-8 years that you say ) I have been using desferal since I was 9yrs old and I am 37 now....

The other thing you brought up is that about thal marriages...Well I have many friends of mine who are Thal Majors and are happily married...I think its all up to the individual...Another thing is that if that child does grow up and decides to get married I am sure that their parents would have talked to them about marrying another thal minor and what it intake if they do marry...I am sure that most will think really hard about it..

I dont think that Thal marring a Thal are allowed to adopt in some countries given that they both have Thal Major and they will be classified as unfit!!!!

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 ) 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 

I don't know if I came on too "heavy" in the previous post, but that was just me with my philosopher hat on ... 

Not like that most of the time, as Ashish and Andy will probably testify!

I don't think you came on too heavy at all.  I agree 100% with your post, so you basically took the words out of my mouth.     I'll write more on it later, though. 

Hi,

Congratulations to Michelle who is pregnant with her second child. And that leads into why I started this topic.

The day I began this topic, I was talking to a young woman who lives in the gulf area, and she told me her family has said she can NEVER have a child. Well, we have a bunch of thal moms in this group who can dispute that.
We need to do our job educating people to the reality of life as a thal in the 21st century. Yes, thals can have kids! Some do it without any help and others may need some hormone treatments or in vitro fertilization to get pregnant, but it does happen and is in no way a rarity.

There are a lot of cultural issues that also have to be dealt with on this subject but we can do our best to spread the word and let thals everywhere know that they can have normal lives, including being parents.

 Hello to everyone

I have a four year old and yes he has the trait but he is the best vthing that ever happened to me. As I was growing up I wasnt sure if I could even have children or be happy enough to take care of children.  I am twenty eight years old and  keep myself heathly so that I can be around for my children and hopefully their children. I am now 18 weeks pregnaqnt with my second and nothing beats this feeling of being in the future generation where wev are not limited by Thal anymore we truly can lead a normal life I know I do. I think having a postive outlook helps a lot and also my trust in God!!

Hi Smurfette,

When I said that Chilators came 7-8 yrs ago, I was talking about 3rd world countries, & its true to say that chilators are not yet available to almost 40% of thals due to financial constraints. The conditions in 3rd world countries are still not very easy going. It is not even possible for 60% of medicaly fit  population to even  sustain their lives with sufficient nutrition......................& when we talk about medical treatment its not even thinkable for majority of patients.
Well when you say that your many thal friends are happily married to medicaly fit partners you are correct. I am not opposing what you think coz your thinking comes from your enviorment. what I thin is also correct coz I have seen a diffrent life then what you have. I said even if a Thal marries a normal (medicaly fit) partner, there is nothing bad but make sure that the kid should not carry Thal trait, coz that will keep the probability of a thal major in the family chain. & I support adopting a normal child a better way out for this all. I dont belive that if things followed on this ideology will make the couple life more abnormal at all. I mean if some one adopts a child he/she will not be lesser happily married.

Prince,
What you said about chelators and other treatment in developing countires is so true. When you look at the Maldives and see that the oldest thals there are only around age 25, then you realize that chelation is very new there in relative terms. The cold hard facts of life have been that money talks, so the new treatments have tended to hit the wealthier nations first. India has been very lucky in that Cipla, has manufactured L1 as kelfer there for well over ten years at a cost that makes the drug much more accessible. I won't hesitate to say that because of this, many of our friends in this group are still alive and doing well.

Things do need to change in this world but how do we change them? The medical needs of the population are seldom the top prioirty of governments that seem more bent on creating strong militaries at the expense of human needs. The US is by far the biggest offender in this category, but this happens elsewhere also. What can we do? It may seem futile and even be futile, but we must raise our voices around the world and demand a world where people...all people...come first. Let's put our fears and hatred aside and embrace our fellow beings on this planet. Let's demand that governments take care of their own people first, before they take care of themselves and before their reckless decisions waste another dollar on policies that have nothing to do with the people they supposedly represent.

I'd also like to comment on what Smurfette said about adoption. It is an outrage, but unfortunately true, that in many places thals are not allowed to adopt. Does it make any sense that thals can have a child of their own biologically, but can't adopt? How can a thal be labeled unfit to adopt when they are perfectly capable of caring for their own?

What a world! 

I also think that is unbelievable!! I cant believe that Thals can not adopt thats just absurb!!

India has been very lucky in that Cipla, has manufactured L1 as kelfer there for well over ten years at a cost that makes the drug much more accessible. I won't hesitate to say that because of this, many of our friends in this group are still alive and doing well.

More like 15 years, and then there was the 3-4 years of trials before that.

But, Amen, to what you posted, Andy. Lots and lots of us owe a big debt to Dr Hamid and Cipla.  In the world of for-profit pharmaceuticals, it is not often that you have such people. In fact, on a slightly unrelated topic, loads of people in Africa also owe a big debt of gratitude to Dr Hamid for his decision to sell combo drugs that fight AIDS at just above cost - a price which was about 1/30th what the patent holder wanted to charge dying patients.

Sad world we live in when pharma profits trump individual lives.

its true to say that chilators are not yet available to almost 40% of thals due to financial constraints. The conditions in 3rd world countries are still not very easy going. It is not even possible for 60% of medicaly fit  population to even  sustain their lives with sufficient nutrition...

Prince,

I don't know if I can really agree with the above, especially the bit about chelation. At my centre in Bombay, pretty much everybody is on chelation, either through their own means or due to some help from a couple of trusts active in Thal. I personally know  a couple of thals, who did not receive chelation in the last decade but are now pumping and popping pills away to get their iron under control, and full of an amazing new vitality. I don't know if conditions are really that much different in northern india, than the western parts - but, it is rarely that i hear these days that some one is not taking chelation (at least in the cities) because they can not afford it. With L1 at c. Rs1500-2000 per month/effective dosage, there is lots of help out there from charitable trusts. Things are the not the best of all possible worlds yet, but definitely improving .......

And, given that India's population continues to increase at c. 2% a year, I would have to think that there is a fair bit of nutrition out there .... 

Hello Poirot

Yes, when I say that chilators are not availble to many Thals I am not exagerating & I agree things are changing at a good pace & it is we who ourselves have to take all the initiative to collect the resources & direct them to the right perpous.

Soon If we want conditions may change as we want them to ......................