When 2 thal minors want to have children.

Ah, that was actually my opinion Danielle.  Not sure where the confusion is there?

Yes, it was your opinion.  However, you were subtly attacking Jemma.  You are able to state your opinions, but I'd rather see you do that without making accusations or sarcastic remarks.  I understand that this is a sensitive subject for you, since your wife has Thal Major, but it's a sensitive subject for most of the members here also.  Andy and I would like to keep this forum as civil as possible, while giving everyone a chance to state their own opinions, whether positive or negative. 

Andy,

I was really saddened by some of your comments. Let me try to address your concerns in a few posts, since you raise mutliple issues.

First,

I am still quite amazed that a citizen of India can make some of the statements you make about being a thal in India. Face it Poirot, you are one of the priviliged in India.

You look at me today and say I am privileged. In many ways, I am. TODAY.

But, I was NOT when I was 5 or 10 or 15 years old ..... I had to struggle through the same system, which was much worse then. My family was bottom of middle-class, so it is not like they had tons of doubloons to spend on my treatment. I started chelation only at the age of 15, had my splenectomy done at 17. So, been there, done that, buddy. Survived to tell the tale. And, sure I have an attitude about it and am not apologetic about it. And, I want every thal to have the same attitude, too ...... the same "can do" attitude.

I worked to get to this position, it is not because of a rich family background..... the ones who were rich emigrated to US or UK. And, I do want to highlight this fact to all other Thals who may be thinking the same as Andy. I agree I was lucky to be in Bombay those days, where some care was available. Care was patchier elsewhere. Today the same quality of care is available in most big cities. And, my exhortation to fellow thals is that if I could do it those days, you can do much better these days. I am not really special in anyway that allowed me to do this ..... So, go for it!

Poirot

Second, Andy, when you speak about India's problems, thus:

How many of your countrymen are provided the care you get? How many thal majors die before the age of 10 due to lack of even the most basic care? You can't ignore that this happens widely in India, Pakistan, Thailand etc. It is a pure and simple fact. Things may have changed greatly in India, but this is not for all thals and many still find life involves little if any care. How many Indians can afford desferal? Not everyone can use L1. When I was in India and saw the incredible amount of poor people living in the cities (far more are in the rural communities), my thought was "how many of these are thal carriers and what life do their thal children have?" It can't be ignored.

Do you think I am not aware of this? You are amazed at my statements about India? Shouldn't you be happy instead that care is improving, EVEN IF, not ALL thals get it right now? I have tried to be objective about India and conditions here, although this is biased by my experiences.  But, sometimes you hear such "motherhood" statements, that you have to object. INDIA IS A POOR COUNTRY. We know that, you know that, everyone knows that .... so, can we now take that as a given? It is a country of 1.2bn people, so when you apply examples from your own universe, please be aware of the scale difference. Now, what has happened in the last 10 years? Average life expectancy of thals have gone up, across the country, not just in Bombay. The availability of L1 has improved chelation. There are now trusts in many major cities that provide desferal free of cost to those who can not afford it. Awareness of thal has increased, so there is a lot more testing that happens for thal minor and in our society of "arranged marriages", you could then not get married to another thal minor. What else has happened? Infant mortality has come down. Polio has been eradicated. The scrouge of Malaria has reduced. AIDS is being tackled more openly (and hence more effectively) now.

Does that mean everything is all right about India? No, it is NOT....... but, it takes time given the population base that we have. Does that mean we should not celebrate the progress we make and focus on the upswing as it happens? If I am positive, maybe that positive feeling rubs off on 5 more people and they start acting more positively, and then that rubs on .... etc, you get what I am saying? I am not sure how many thal majors die today before the age of 10 nationwide (in my centre, we have not lost anyone below the age of 10 in the last 15 yrs), but I know the number is significantly lower than what it used to be 5 years back. And, to me that is cause enough to be positive today.

You looked at all those shanties and wondered "how many of these are thal carriers and what life do their thal children have?". The shanty dwellers would have laughed at you for your "first world" sentiment. They have more pressing problems to think of ..... housing, basic sanitation, potable water ...... so the problems of India are many. Does that mean we should stop being positive for the progress we are making in thal treatment in India today, however inadequate it may still be in comparison with Aus or USA?

Finally, Andy, when you talk about Maldives:

Your remarks about the Maldivian trip are incomplete. We did go there specifically because the problem there is so difficult. In spite of reasonably adequate basic case in Maldives, many patients there still do give up and refuse to chelate or do any of the things that will keep them alive.

Oh, I am confused now. Why DID you go to Maldives, then? I thought it was to tell the Maldivian Thals that life was worth living, and that they could do that, with help.  To tell them to chelate, so that they could live. And for Shilpa to relate her real life experiences. Sure, you  listened to them  ..... but did that make you change YOUR message about life?

We surely couldn't go into Maldives and tell them life is a bed of roses if you're thal, because they're too smart to believe such a statement.

You couldn't tell that to any "normal" person either, so why bring it up in this context. Life as a bed of roses probably only exists in the life of the idle rich in P G Wodehouse novels, and even then Bertie Wooster had his troubles.

Maldives needs a huge shake up in their society to educate the general public that thals can and do live real lives, that include careers, marriage and children. Until this happens, many thals there will continue to see no reason to live, as their social future remains quite often bleak. Every week I have another Maldivian tell me that someone broke up with them because they are thal and the parents will not allow it. Without the hope for basic human companionship in life, many thals do give up. This has to change in Maldives, and frankly, after reading TruBlue's post mentioning how so many people within the communities producing thals in Australia, also treat thals badly and either aren't allowed or would even think of marrying a thal, there is obviously MUCH work that needs to be done to change attitudes in the very developed Australia.

I couldn't AGREE more with you. You change attitudes by presenting positive examples, by talking a positive line, by boosting morale and saying this is not the end of the world.

I am not saying and NEVER said that you stop listening to the negatives or seeing the negatives, but it is MUCH MORE important how you deal with the negative when you come across it. Isn't that our objective? To provide SUPPORT and GOOD CHEER when people are tired and can only see the negatives? I would be very sorry to see this objective lost.

Poirot

.

.

Thank you for reminding us, Flower.

  to all.

Poirot

Well, Poirot, I think you successfully distorted each point I made. I will say this grew out of your problem with me presenting the negative side of thal and in this context of this thread I will continue to say that we would do a great disservice if we ignored the multiple negatives of being a thal. Jemma needs to know the reality of what it is to be thal just as any prospective parent of a thal major should.

I'm not going to battle you point by point because I haven't seen any point made that was relevant to anything I said. Although I would add to your list of concerns of the poor, lack of health care. Yeah, that also is a very pressing need for the poor just as it is for us all. And are we to believe that because they are poor that they don't care when their thal children die? They care just as much as you or I would care if one of our children were to die. Just because things are going smoothly at your local center does not mean that represents a majority of India. The parochial views often expressed in this group demonstrate tunnel vision and nothing else. This is a big world folks, and sometimes you have to look beyond the end of your own street to see what it is like elsewhere.

Your comments about our trip to the Maldives are downright stupid and I really think you should be embarrassed for stretching so far to try to make points. We didn't have to bring a single negative point to anyone in the Maldives. THEY brought and bring them to us daily! I'm not going to ignore these problems and tell them life is peachy keen for thals because it isn't there and quite frankly it isn't anywhere. When you can put your transfusion in a pill and take a chelator that has NO side effects and also eliminate the host of problems associated with thal, like osteopenia, diabetes, thryroid and hormone malfunction, reproductive disorders, spleen and gallbladder troubles, enlarged left ventricles in 95% of thal patients, pulmonary hypertension, majority death due to heart failure and the host of other problems, please let me know. Then I will present the rosy picture you think we should to prospective parents. I was attacked for saying Danielle's post was honest and dammit, it was! A prospective parent needs to know what they're getting into and we are being competely disingenuous when we pretend all these problems of thal don't exist. I was asked yesterday by a patient that if life as a thal is so wonderful, why do we need a support group? There are people who would like to speak out on this board who won't because they are afraid of being attacked and called things like downtrodden victims who would have a chip on their shoulder even if they weren't thals. That is one of THE MOST INSULTING things I have ever heard applied to thals and it made me quite ill to read. What a totally insensitive thing to say to patients whose life has been a constant struggle to stay alive! TruBlue is free to shoot from the hip but as is often the case when one does so, all he managed to do was shoot himself in the foot. Thinking before talking is always a recommended process. Coming into a group of people who gathered for support and attacking them as downtrodden victims will not win many friends.

Personally I am quite fed up with this thread. People are posting for the sole purpose of pushing their own "moral" agenda and also for the purpose of making obtuse points, when the person who started this thread came with the hopes of finding some support and counsel about a situtaion that hasn't even arrived and instead of support she was attacked. When others come to her defense they have also been attacked. I will not back down. I know what type of group Lisa created and the tolerance that she expected from its members and I will fight to keep this group tolerant as Lisa would want me to. She would never have condemned any woman for considering an abortion and we shouldn't either. And please, if I hear one more person tell us that they are pro-choice and then go on to talk about killing babies, I will scream! And one of these people had the gall to attack my comment about honesty? Don't make a statement only to counter it with your own words.

Wow! Am I a little ticked off by this thread? YES!!! If there are people here who want to define friendship by insisting their friends agree with them on every issue then that isn't friendship. If you think I won't be your friend because we have different views on what rights a woman should have over her own body you really belittle our friendship. Just as many of you did, I will also speak my mind but I will also do everything I can to keep us from each other's throats.

One more point I would like to add. While we have been so consumed by this topic because the word abortion was used, other people have come to this group with problems they actually already have and been virtually ignored. Can we please get back to business and address these?

Hmm, I will submit any future posts for your approval then Andy and make sure that they conform shall I? I can't reply with the clarity that I would like to for the simple reason I private messaged you with.  Don't stress too much though mate, Ive made my points and will continue to communicate with the others I have met in my brief time in this forum prvately without submitting further posts. In closing, you accuse others of missing the point here Andy, you might want to look a little closer to home before brandishing that claim. Would have appreciated the opportunity to get the old pistols out and shoot straight on this one too.  Have never hit my feet yet but you never know?

TruBlue,

I do not understand why you have joined a SUPPORT group. This is a group that people join to find help, answers and support. It is not one of the many online forums where people go to rant and rave and shove their weight around and attempt to intimidate. It is not the old west where everyone shoots first and asks questions later. Members are expected to abide by a certain code of conduct, with one of the main expectations being tolerance of others and their views. We are an international group with many different races and ethnic groups, religions and spiritual beliefs. We are not here for the purpose of attacking someone because we disagree with his or her views. We are not here to call names and deride each other. Yes, I have a great problem with you calling anyone who agrees with Jemma, a downtrodden victim with a chip on their shoulder. There are many thals who do not think their lives have much if any value and this has nothing to do with anyone carrying a chip. It has to do with the life they are presented and the many, often cruel obstacles placed in their paths. I counsel people like this on a daily basis and to hear you call them downtrodden victims and stick to your guns on that statement does cause considerable outrage. I have had close friends give up and die because their lives were that bad. I do everything I can to convince people that their lives are indeed worth living, and acting like somehow it's all their own fault because of a bad attitude is one of the worst things we can tell thals. So many people struggle so hard to stay alive and fight not only medical but constant social battles and to portray them the way you did is not only wrong in fact, but also just plain nasty.

You said you made your point, but your main point seemed to try to be rude, insensitive, insulting, sarcastic and derisive. You've insulted Jemma and Danielle and anyone who dares disagree with your views. I do not ask people to submit posts to me and even when people have offered to delete their own posts that may have been too harsh I never tell them to do so. That is their own decision. What you post is up to you but we do expect that all posters will try to be tolerant of each others and each other's beliefs. This has served this group well and will continue to serve this group well.

And for those who wish to turn this into a forum on abortion...Please do a search for one of the many online abortion forums. This is a thalassemia forum. The rights and wrongs of abortion are debated perpetually but are not appropriate here.  We will have people come to us who are considering abortion or have even had abortions. It is not for us to judge but it is for us to help and support where we can. Many people will be counseled about a thal major pregnancy and abortion will often be presented as one alternative. Some will choose to terminate a pregnancy and some won't. If you feel you can't offer support to one who has had an abortion or is considering one, that is your choice but please do not attack the person who brings the problems to us or anyone who offers them support. I am a vegetarian. Would it be appropriate for me to post insisting that others also adopt my beliefs and call anyone who eats meat an animal murderer? No, it wouldn't be, anymore than anyone should be saying we should all be some specific religion.

Please keep things civil and please remember this is a thalassemia support group.

That was an awesome post, Andy.  I couldn't have said it better myself.   You always manage to explain exactly how I'm feeling, but put it into MUCH better wording.   

I think we've ran this topic into the ground.  If Jemma or anyone else has any questions or concerns on this matter regarding Thalassemia, and want to discuss it in a civil manner, then by all means continue.  However, if the conversation is just going to be a back and forth bashing contest, then Andy and I may decide to lock the thread to prevent further arguments.  I'd like to think that we're all mature enough to not have to resort to that.   

So, please, retract your claws and play nice. 

As we see battle of the words get heated up... I must say I am more than happy to see these issues be addressed by Andy and Poirot as sometimes they get burried but they are hard issues that need to be taken into account at some point and no better time than this. I have managed to travel to Europe and seen the highs and lows of the economic state of countries and also the highs and lows of patients living with thalassaemia.


Remember why we are all here and remember treat one as you would want one to treat yourself.

Miaki

First of all hats off to Andy    ........
 
I would not have been able to retain my cool in this thread either. I do not like anyone telling anyone what they should and have to do. Wonderful posts by Andy. 
Did not know you could also gunfight the 'ride 'em roughshod'...cowboys   

Whoa....this is a support group mate. We support everyone, esp. the ones with the real pain (which includes the negative outlook and approach). The ones you WRONGLY call with a 'chip on the shoulder'   need the most support btw. Let's  not discriminate people for "decrying their existence".      


Poirot, I feel that you are just picking up on words and twisting them....and failing to see the genuine meaning and intention behind them.
 You did the same with Mushto's post, about not putting any more thal majors in a life of continuous pain. Yes, the daily needle pains them a lot more than it pains us...........they are very slightly built.
Before you all pipe up ....just know the facts. Maldives has an 18% rate of thal trait. The children do not live beyond 20's and not because desferal is not available. It is just that they do not have the "will to chelate" stemming from lack of will to live.

 

Finally, Andy, when you talk about Maldives:

Oh, I am confused now. Why DID you go to Maldives, then? I thought it was to tell the Maldivian Thals that life was worth living, and that they could do that, with help.  To tell them to chelate, so that they could live. And for Shilpa to relate her real life experiences. Sure, you  listened to them  ..... but did that make you change YOUR message about life?

YOUR message in life ...what does that even mean ?
What is the connection with Maldives, I fail to see the link Poirot??  What has Maldives got to do with changing one's message in life. That is an irrelevant connection you made just like the flaky Phoebe from Friends. 

 

You couldn't tell that to any "normal" person either, so why bring it up in this context. Life as a bed of roses probably only exists in the life of the idle rich in P G Wodehouse novels, and even then Bertie Wooster had his troubles.

 So do not say "In any case noone's life is a bed of roses." Ye ye we know that.
Does "everyone" start out from birth though...with a lifelong condition that requires treatment. Where many of them feel from childhood that they may die anytime, yes even in today's day.
  People forgot to tell Jemma that her child will also have to hear many hurtful comments from other kids.  That every thal major has to  watch many of their thal major friends die.  Yeah ALLLLL of it could happen to anyone........but at least they have a fair odds. With thalassaemia there are more certainities and less odds.

For some thal majors....It is just plain worse than anyone here can begin to imagine.  A crown of thorns and a bed of hot coals. Anyway, noone gets a bed of roses ?  Right.  

Why doesn't everyone just go tell them not to be negative, before sitting here and glorifying thal major. Yes being positive is good....but not by glossing over all the bad parts. More by stating the good along with the bad. Keeping a balance.

We, the people who handled our thal major deserve credit................that does not make the debilitating disorder ( as I heard described in a medical text) any less painful. The joy is in our attitude, NOT in "having the thalassaemia major".

 

I couldn't AGREE more with you. You change attitudes by presenting positive examples, by talking a positive line, by boosting morale and saying this is not the end of the world.

What you are saying boils down to "it's all just about the attitude"...what an erroneous simplification. All the positive spirit talk is just lovely but one needs some "even breaks" before that can set in.....suppose someone does not  have your spirit and cheer......are they supposed to be denied a better life?? Talking positives is all very well and needed, but noone wants your intangible talk, what do you have to show to them tangibly.........the poor man will say first feed me....then talk of positive attitude.  You can't tell him, "you do not deserve food just because you could not get it for yourself".   

 

I am not saying and NEVER said that you stop listening to the negatives or seeing the negatives, but it is MUCH MORE important how you deal with the negative when you come across it. Isn't that our objective? To provide SUPPORT and GOOD CHEER when people are tired and can only see the negatives? I would be very sorry to see this objective lost.

Err,... Hello Poirot,  that is exactly what we did do..... you are stating the obvious.

There is no point in theoretical analysis and dissections, without having gone out there and practically experienced all that you have been commenting about.

Regards,
Shilpa.
 

Poirot, I feel that you are just picking up on words and twisting them....and failing to see the genuine meaning and intention behind them.  You did the same with Mushto's post about not putting any more thal majors in a life of continuous pain.

Look, Shilpa, you will excuse me if I do not want to be part of any project to create a new Aryan race .......
As far as intentions go, you know what they say ...... the road to hell is paved with good intentions.

Poirot

Talking positives is all very well and needed, but noone wants your intangible talk, what do you have to show to them tangibly.........the poor man will say first feed me....then talk of positive attitude.  You can't tell him, "you do not deserve food just because you could not get it for yourself". 

Is THIS what you think I was saying in my posts?

Then, I am really sorry that I could not be more eloquent.

Poirot