Thalassemia Patients and Friends

Discussion Forums => Living with Thalassemia => Topic started by: Andy Battaglia on February 10, 2006, 05:15:36 AM

Title: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 10, 2006, 05:15:36 AM
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.
Title: Re: Changing the Mindset Regarding Survival
Post by: Prince on February 10, 2006, 01:39:00 PM
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.
Title: Re: Changing the Mindset Regarding Survival
Post by: Smurfette on February 11, 2006, 04:53:45 AM
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!!!!
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 11, 2006, 03:45:13 PM
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




Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 12, 2006, 02:53:26 PM
I don't know if I came on too "heavy" in the previous post, but that was just me with my philosopher hat on ...  :biggrin

Not like that most of the time, as Ashish and Andy will probably testify!
Title: Re: Changing the Mindset Regarding Survival
Post by: Danielle on February 12, 2006, 02:56:09 PM
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.   :biggrin  I'll write more on it later, though. 
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 12, 2006, 05:37:56 PM
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.
Title: Re: Changing the Mindset Regarding Survival
Post by: michelle0630 on February 12, 2006, 05:56:18 PM
 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!!
Title: Re: Changing the Mindset Regarding Survival
Post by: Prince on February 12, 2006, 10:17:24 PM
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.
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 12, 2006, 10:52:44 PM
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.
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 12, 2006, 11:37:10 PM
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!  :crazy
Title: Re: Changing the Mindset Regarding Survival
Post by: michelle0630 on February 13, 2006, 12:42:59 AM
I also think that is unbelievable!! I cant believe that Thals can not adopt thats just absurb!!
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 13, 2006, 01:42:41 AM
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.  :love 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.
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 13, 2006, 02:07:21 AM

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 ....  :biggrin
Title: Re: Changing the Mindset Regarding Survival
Post by: Prince on February 13, 2006, 03:32:28 PM
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 ......................
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 16, 2006, 01:54:11 AM
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 ......................

I agree. More power to you, Prince ...... Holler, if you need any help!

And, nice "photo"  :biggrin
Title: Re: Changing the Mindset Regarding Survival
Post by: Ash on February 16, 2006, 05:14:16 PM
I don't know if I came on too "heavy" in the previous post, but that was just me with my philosopher hat on ...  :biggrin

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

No of course you are/were not like this, you have never been a poster ever, so this is a refreshing change are you planning to be there for the next "International" conference?

Ashish
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 17, 2006, 02:01:45 AM
No of course you are/were not like this, you have never been a poster ever, so this is a refreshing change are you planning to be there for the next "International" conference?

You have to check the financial websites for my earlier posts   :biggrin
But, I promise to stick around here, sir, if you will have me   :smile2

"International" Conference?  :huh Which one would that be? I did attend the one in dinky town Pune  :rotfl

Title: Re: Changing the Mindset Regarding Survival
Post by: poo gill on February 23, 2006, 11:05:19 AM
Hi All

Yes Poirot, conditions are not that great in Northern India, it could be due to the number of cases increasing every day. Prince is right, there are children who donot even have the money for folic acid which is absolutely subsidised in places like PGI, C'garh. Actually there is a major problem as the people are not aware of this disorder. In fact I vaguely remember it studying in school abt sickle cell anemia,  untill it hit me in the face when my son was diagosed with it. i did not know head ir tail of it. in the hospital where my son is following up for his treatment, I have seen 2 cases in one family, . First cousins too, or sometimes even 3 n-4 new cases of thal coming up in a week.  And it is all due to unawareness. When govt can do leprosy campaigns, HIV then there should be initiation for imparting knowledge on this disorder to young couples who are just about to get married. 

We need to spread the word around to maximum number of people about this.

Title: Re: Changing the Mindset Regarding Survival
Post by: Prince on February 23, 2006, 02:50:53 PM
Poo Gill

I also go to PGI Chd for my treatment & am in consent with what ever you said about situation in north India.
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 24, 2006, 06:44:55 AM
Yes Poirot, conditions are not that great in Northern India, it could be due to the number of cases increasing every day.

And it is all due to unawareness. When govt can do leprosy campaigns, HIV then there should be initiation for imparting knowledge on this disorder to young couples who are just about to get married. 
We need to spread the word around to maximum number of people about this.

Hi Poo,

It is very distressing to know that the conditions in North India are not great  .... (especially since north india politicians appropriate so much of south india tax money  :wink). Of course, conditions in south were also not that great 15 years back, but I think availability of care has spread much more rapidly due to better quality governance.

About spreading awareness, and I have had this debate with a few people from TIF Delhi, as well, at the Pune conference ....... my view is that you should not rely on the government to spread awareness. This is because thal issues come way down in priority list for the Indian government (and in my view, rightly so) because the government has to deal with many more pressing health issues such as AIDS, Malaria, water-borne diseases, infant mortalities in India and it has only limited resources. Although, it is tough luck for us thals that the govt can not give us the same attention as it does with its polio and malaria eradication campaigns, I think it is only right from a numbers perpsective.

So, it is up to US ..... to spread the word AND act. And, I thank Andy/Danielle for this website and Ashish for his website (www.thalassaemia.ws) as steps in that direction. We need to raise money privately through NGOs and charities to help Thals who can not afford medication, we need to get the better hematologists to travel through the country to raise the knowledge levels of other doctors, we need to hold smaller conferences in many more cities and invite all the GPs from these cities to attend and learn about Thal. That is how we can raise awareness and create a groundswell for action.

I remember, at the Pune conference, sitting with George and some thals from other cities and discussing issues that affect them, when this gentleman from Ahmedabad walks up to us and asks how can we get all couples who intend to get married to do the test that identifies the thal trait. So, I shared some experiences from Bengal about how a Thal association there involved the matchmakers (who do the horoscopes, etc) and got them to insist on all prospective couples to do this test. It has taken time for this idea to be accepted but acceptance has grown to a level where an association of pujaris (!) said that they will not conduct the marrriage rites unless the groom and bride produced the test reports! But, no, this was not acceptable to our man - he wanted some magic bullet to get everybody to just do this now! HELLOOOO!!! There are NO  magic bullets .... you want to raise awareness? Do the work required for it ..... you don't want to do it? Don't crib about it then. The govt has loads of other issues to tackle ... what makes you so special?

And, this brings me back to my core point:

                      It is up to us.

We CAN improve our quality of life if we work together, instead of waiting for the govt to do something about it. We can bolster each other's morale (as we are doing here), we can point each other to resources that are already available, we can share our experiences and our knowledge (and, believe you me that collectively we know more about Thal than the doctors - my doctor and I usually have a discussion about treatments, it's not a one-way process) and we can raise money together. The last is very important. If we can raise money directly for Thal causes, by getting Thals involved directly, then our control on our lives increase that much.

TIF in India, are you listening???

Cheers





Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 24, 2006, 07:58:38 AM
Poirot,

Excellent post! I agree that government can't be counted on to do what needs to be done, in India and in many places in the world. I don't think it's totally futile to try to change that but as you said, they have so many other problems to deal with. I do believe that making some noise can effect change from the local to the national level, but often appealing directly to the government is not all that needs to be done. A government often responds when something becomes well known and in the public eye. At the Pune conference, one of the speakers talked about what needs to be done to get thal the attention it needs. He mentioned that we need to use some garam masala. I asked my friend what that meant and was told it means spice. Then I understood. I am a retailer and a popular strategy in small business retailing is called guerrilla marketing. The concept is that you use whatever means may be at your disposal to advertise and promote yourself, trying to produce a greater effect from what resources you do have by using innovative means. An example in retailing would be participating in a charitable event that you know will get some worthwhile media coverage, thereby giving you an advertising value far beyond the cost of the participation. What this means is you maximize your efforts by reaching a wider audience through some innovative strategies. The whole point is to keep yourself in the public eye as much and as often as possible.

We know the realities of thal in many places and that we do have to find innovative ways to get attention to accomplish what needs to be done in terms of pre-marital testing and proper treatments. One example would be to get popular celebrities to commit to helping both publicize thal and also raise money through appearances at benefits. Pete Sampras, the great tennis player is a thal minor. Many consider him to be the greatest player ever. Once his career was over he did make public that he is a minor. What can we do to enlist him as a worldwide spokesperson for thal? How can we get other celebrities to take notice and make a cause of thal? Imagine thal as a topic on Oprah (thank you for that idea, Shilpa). We would reach hundreds of millions of people worldwide. How do we get her attention?   How do we give thal some garam masala? How do we spice this up? How do we get noticed by the media? We are living in a media dominated age and we need the media interested in thal issues. The media understands the idea of garam masala. Ratings jump when they can add some spice to a story. We need to think of angles and approaches that will garner us the media attention we need to push an agenda that will help thals. We need to see what works and emulate it.

Poirot is absolutely right when he says we have to do it ourselves. We have to be the ones that educate the world. We educate each other. Take that information and educate every person you can. Make sure your doctors know as much as you do about thal. Make sure they know where to go for information. In The Maldives, both the educators and students are being taught about thal and the importance of testing. This can be done at a national level, but it is more likely in a country like India, that it can be done at the local level first, as individuals make the school systems aware of thal and the necessity of education and testing. This is a way we can act on a level where we have easier access.

Don't ever feel powerless. Every individual can have some impact. Do all the little things you can. Teach every single person you can about thal. Make it an issue in your local governments. Look for any opportunity to get the media involved. Every time there is any event such as fundraisers or conferences, send a press release to all the local media. Take every opportunity to make helping out with thal a popular cause. Let's each of us add a little spice and bring thal the attention it needs.
Title: Re: Changing the Mindset Regarding Survival
Post by: Canadian_Family on February 27, 2006, 05:47:07 PM
Do I really have to think about the survival issue, as a parent my only concern is to provide my child with all the opportunities, love and care that make her life wonderful as much as possible. I think quality of life is much more important than the quantity.

Thalassemia is touted as a manageable condition and prognosis is good, advances and cure will come with time and we all hope for it, for now the important fact is we live today and lets make it wonderful each day.

Regards
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on February 27, 2006, 06:14:52 PM
I think your attitude is wonderful. You already understand the issue. But not everyone does. I will soon be traveling to the Maldives where the attitude of the public towards thals needs a major adjustment. And unfortunately this is too common around the globe, even in developed countries. I have had patients in the US tell me that their own families don't believe they can ever have a normal life...education, career, marriage...We need to change the mindset in these cases. We need to get them to think more like you and believe that their kids can have real lives. They too, need to believe there is a quality of life to be had by thals that is no different than the quality anyone else is allowed.
Title: Re: Changing the Mindset Regarding Survival
Post by: pplrjsh on February 27, 2006, 06:33:14 PM
Dear All
            The dusting on awareness is to be done by us only as poirot is true please follow these points.

1 ) Start to speak to your neighbour,relative,guest & unknown co- traveller about this silent disease.No idea when it will strike so better get THALASSEMIA TEST & be sure of your status,to avoid Thal Majors.

2) Tell  all about your experiences of Blood procurement, transfusion & then iron overload to be chelated with painful  subcutaneous needles lifelong to run the Body without a Organ being disturbed.

3) But side effects & toxicity of the Blood & Iron chelators will give anguish moments but are bearable.

4) The people coming from remote villages should not hide the facts of their wards to the local population where they reside must & should tell the fact about them being Thal Minor & the child being Thal Major (Blood Transfusion depended).
  
4) To get their Brothers & Sisters Thalassemia Test done at the earliest because one is a Thal Minor another of the same family can be Thal Minor so extended family screening can minimise the risk & head counting is easier.

5) Ladies are requested to talk on how better to help the affected & not to back bite or make fun of these affected children in their vicinity.

6) There is a saying CHARITY BEGINS AT HOME so start from home immediately.

 hope those living with or expecting mothers will help in sustaining the incidence of Thalassemia by mouth publicity.    

with warm regards
pplrjsh :hug
Title: Re: Changing the Mindset Regarding Survival
Post by: Poirot on February 28, 2006, 01:50:13 AM
my only concern is to provide my child with all the opportunities, love and care that make her life wonderful as much as possible. I think quality of life is much more important than the quantity

Bravo!
Title: Re: Changing the Mindset Regarding Survival
Post by: LLevine on March 17, 2006, 07:40:45 PM
Hi Andy,

Great discussion topic and I am new to this site.

I am a 33 y/o Thal living in the US (chelators came out in the 70's). I comply with my therapy.
I have a masters degree and am married and work full time. The way I see Thal is that we can do what everyone else does, we just need to work harder to take care of ourselves.

I am not sure why people always say that we cannot be "normal" even people responding to your post. The first thing our society needs to do is eliminate that the word "normal" from our vocabularies. What does it mean anyway? EVERYONE is different and diverse. And everyone has an issue or a challenge they need to deal with in life. So - let's stop saying that. What is the challenge in Thal is the attitude that people have about it - both patients and non patients. Some cultures beleive their kid is not marriageablle or they are shamed - that is their issue and as I see it that attitude is sad. Why should someone be condemmed just b/c they need blood transfusions? They are as marriageable as the next person. Two thals can marry each other too - they just need to make a decision about children. We need to empower ourselves and others. People need to be educated and be open about their disease so we can educate the communiy. There are circumstances where some patients are quite ill and are unable to work etc., but for the most part it is attitude that stops us - not physical inability.
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on March 19, 2006, 11:10:34 PM
LLevine,

Thank you so much for your post. I love your remarks about being "normal" and agree that we should just eliminate it in reference to people. We are all unique individuals and no one should ever be discouraged from following their life's dreams. There may be a few very physical activties that would not be recommended for thals because of the physical contact involved, such as American football, but for the most part thals should believe they can accomplish anything they choose in life. Don't let others tell you what you are "allowed" to do in life. And please, parents, bring your children up to believe in themselves. The days when the parents were always there for the thal child are gone as thals are living much longer lives these days. Teach your children to be self-sufficient and self-supporting. Teach them to not accept limits in their lives. Teach them that aside from a need for blood, they are no different than anyone else.

As LLevine has said here, so much is about your own attitude. Please don't let people tell you no. I know a thal major in Germany who has two kids, is helping to build a new organization in Europe dealing with all blood disorders and is also going to medical school. She will not allow anyone to give her limits in her life and that is how it should be.

Believe in yourself. Believe in your children. And believe that it will make a difference because it most certainly will.
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia on March 26, 2006, 01:21:22 AM
I was talking to a teenager from the Maldives today and he asked me my age (53) and then he said "I wish I could live that long." He told me what I already knew. No Maldivian thal has even lived to the age of 30. I told him that things have changed and that the Maldivians haven't really been chelating for a long time yet, and that I have met thals in their 40's and I see no reason why they also will not still be here in their 50's.

But his statement speaks so loudly of the reality in so many countries. The Maldivians may now even be a bit luckier than many in other countries, because they are finally getting treatment, even though it still has a way to go to catch up with the western countries. In places like India, Pakistan, and Thailand, there are many thals who never get any treatment. This tends to occur more in poor rural areas but it does happen and to a much larger degree than we want to think about.

This reality shows how important this topic is and how important that we all do what we can to educate and change the perception of thal in these places. Knowing that it a manageable condition is the first step towards changing this. We have to change the belief in the Maldives that a thal cannot live past 30. We must change the mindset and make people realize that thal is now treatable and thals can have regular lives like everyone else. Thals need to believe this themselves.

 I want that teenager to know that yes, he can live to be my age. He also recently suggested another topic that I will be starting. He wants to know what the lives of other thals is like. It's a great idea and I am going to ask many of the thals I know around the world to post in this topic. Please do not underestimate the contribution that you can make in this area.
Title: Re: Changing the Mindset Regarding Survival
Post by: Shikha Mitra on April 06, 2006, 06:37:19 PM
Hi Michelle
Congratulations... I feel very happy for you!
My daughter is 29 and I am just waiting for my grandchild too..
I totally agree that self confidence and a very very positive outlook on life can help anyone with any kind of shortcomings. And Parents have to instill that very early in life. I know it is very difficult for the Parents to see and endure the sufferings of their child... but I think God gives them the strength too.
So far I have been lucky I think, that I was able to raise my daughter with the right kind of attitude inspite of her very difficult health problems and feel proud of her as a person. I too have learnt so much from her. from her sufferings and how she handles her day to day life.
If everything goes well, hopefully I too will be a grandmother soon.....
I think we parents have so many things to learn from all of you....
I wish the very very best for you and your babies..

God Bless

Shikha Mitra
Title: Re: Changing the Mindset Regarding Survival
Post by: Shikha Mitra 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





Title: Re: Changing the Mindset Regarding Survival
Post by: jzd24 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 
 
Title: Re: Changing the Mindset Regarding Survival
Post by: Andy Battaglia 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!
Title: Re: Changing the Mindset Regarding Survival
Post by: Eponine 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?
Title: Re: Changing the Mindset Regarding Survival
Post by: §ãJ¡Ð ساجد 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 (http://www.thalassaemia.org.pk/event.htm)

Take care, Peace!
Title: Re: Changing the Mindset Regarding Survival
Post by: Eponine on November 30, 2006, 05:19:10 PM
Cool!! Fantastic! Proud of them!!!