Changing the Mindset Regarding Survival

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" 

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!

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

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   
But, I promise to stick around here, sir, if you will have me   :smile2

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

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.

Poo Gill

I also go to PGI Chd for my treatment & am in consent with what ever you said about situation in north India.

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  ). 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

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.

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

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.

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

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!

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.

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.

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.

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