Living with Thalassemia...What is Your Life Like?

I want to thank Faizan for bringing up this topic. I think it's an excellent idea.

What is your life like? Tell us as much or as little as you choose. What is the quality like? Do you have a job or career? Are you in school? Are you married and do you have any children? What is your health like? Do you feel that in your life, thal is manageable? Anything you can think of that would describe your life would be very helpful.

I want as many of you to answer this as possible. This issue may be far more important than you think. From talking to so many people in so many countries, I have found that the quality of life for thals greatly varies, but thals in one place may have no idea what it is to live life as a thal somewhere else. Whether your life is good or not so good, please respond. Those who feel that life as a thal can be good need to know that not everyone has it the way they do. Those who don't have it so good, need to hear from those who do feel their life is better, so they can see the potential that exists for thals in today's world.

This can be a very educational topic for all of us. We all need to hear different points of view and what we can tell each other can have tremendous value. Please don't feel you have nothing to say. Everyone has something to say about their life and what may seem insignificant to you may be of great significance to others.

Let's get posting.

You are absolutely right! Many people living with lower morale can learn to live a happier life from other peoples' life state.

For me, it's the attitude that counts! Most of the people here in Pakstan think that only the financially strong patients can enjoy the life to full! This fact is somewhat true but not necessary. There was this patient who was two years older than me. He died last year. He was less financialy positioned than me but he never compromised on getting blood on time and getting Desferal from wherever he can get from. He fought till the end and got the title of the longest living Thal in Rawapindi.

On the other hand I see rich parents who don't even send their children to school just because the kid is Thal. Believe me those kids have even worse life than the poor kids. They are nursed like babies and always kept indoors. This causes so bad phsycological effects on them that they just don't want to live anymore!

This is the bitter truth here! Such children also don't get blood on time and their parents don't care about the chealation etc. This results in poor life quality and the children die before reaching their teens!

Thank God my Parents never compromised on quality of life and made sure that I had no different life than the normal children. They strictly followed the doctors orders and sent me to school, college and finally to a university. I never let Thal get in to my life. Sure there were ups and down due this disease, but I always had the attitude that this is a temporary set back and I will go through it. I won't tell you my old stories all over again as they are available in different places on this site. However I will share the latest that is happening to me.

Last week I had diarrhea like situation and my doc gave me a broad-spectrum antibiotics. I hoped he knew what he was doing because antibiotic act as nukes on my blood counts. After prescribing he told me to keep check on the HB. At that time I knew that bad time is about to come.

Anyway I was prepared to see the HB result after the 3 days of nuking session! My HB went down to 5 g/dl and after getting the regular refrigerated blood on Wednesday, no much improvement occured. Then they adviced me to get hyper-transfusions of fresh donated blood that I had to arrange myself!

I managed to get one donor on Friday and got transfused and next transfusion is due tommorrow (Monday!).

I had Desferal last night and I think that I am trying really hard to survive! If I had the attitude that I can't manage the donors than you can guess that this could be the last few weeks of my life! But NO! I won't say "DIE!" I will fight and I will try my best wether I am able to do it or not. I know that the prayers of all my family and friends(You guys) is with me.

Wow what a question!!!

How does one answer it though? Everyone has different issues on this...

Well let me start by saying that my life with thal major hasnt really affected me either mentally or socially...I have finished school and am working now as a pharmacy technician, It hasnt always been like this though...I have had some down sides to it..But I really didnt let it get to me...I have bounced back pretty quickly...

I havent also been stopped to do what I have wanted to do by my parents...they let me do things that I wanted to do...

Like everyone you have your moments, but I try and not dwell on things too much..otherwise there is something wrong with me!!!!

My health is very good, I try and get my ferritin down between 300 - 400 which I am happy at the moment if it goes down lower I will be estatic  

All my doctors are really pleased with my progress...So I really dont have to worry about anything....

I am pretty much normal as we speak...Do most things others do....

So Thal hasnt really stopped me in doing the things I have and wanted to do...

Hope this helps...

 :wave

Hi there, it is nice to meet you.  If you want to talk about my quality of life, please read my post and get back to me.  I am very open and want to help others as well as to be helped for my own issues.
thanks
Dan

Sajid,
     I can't believe what you just went through. You are such an amazing person; to deal with what you have to go through, and keep going and keep fighting for your life and health. You have such a strong spirit. My thoughts are with you, and I hope you are feeling better.
   Jean

Sajid,
     I can't believe what you just went through. You are such an amazing person; to deal with what you have to go through, and keep going and keep fighting for your life and health. You have such a strong spirit. My thoughts are with you, and I hope you are feeling better.
   Jean

Thanks for the kind words!

Just wanted to tell you guys that today was my transfusion appointment and when I got my HB checked, it was 10 g/dl. The doctor told me to come next week as my HB was not that bad and I had recently had hyper-transfusions, so it is better not to get transfused this week.

I know it is low but here it is considerd good as our transfusion schedule is every two weeks and blood availabity is poor.

If only the third world countries made Desferal and proper blood available to the Thals, what a difference it would make!  Having a proper attitude is one thing and having to run around for blood and medicine ( just read the plight of Pakistan) is another thing.

Yes, I know it can be quite terrible to find quality care in "third world countries" (detest the term, btw), but things aren't necessarily that great in "first world countries" either - you only have to read about Andy's and Danielle's and Smurfette's (mis)treatment to realise this. At least, most of our doctors care about us. And, this is without even going through the cesspool called medical insurance in USA.

I can't get too heated up about the govt not doing enough for us, because, honestly, I can think of many other more important priorities for them - malaria and water borne diseases, to start with. Both kill more people in India  than the number of "new" thals born every year. Cynical? Just facing reality.

I have made this point earlier on this forum, and did the same at the Pune conf - we can do lots more for ourselves, for less fortunate thals in this country by organising better and using non-govt resources better. Instead, TIF in India spends all its time and resources trying to lobby a non-responsive govt.  :wtf is going on?

Ok, I will get off my soapbox now ... sorry for the digression to your original topic, Andy.

Poirot

I didnt mean the Govt. to do anything, because I have mentioned that Thalassaemia is  way below in the priorty list of the Indian Govt.
But can you deny the fact, that how many in India can buy Desferal and pay almost Rs1000 per transfusion? Some of us got lucky in India, because the company you work for pay for your medical expenses. I dont know about you Supratim, but you have a great job with a big firm.. so access to medical care maybe far easier. But in Pune, you heard how many patients are getting enough medication. And most of it not because they do not have an attitude towards the problem or not trying other sources, but most of it because they cannot afford the cost.

If my husbands company was not paying for the costs of my daughter, I also would also not have been able to afford the treatment.. and in India, we probably fall into the high income bracket.

Yes in the USA, they have major issues with the Insurance.. but at least they provide a help to a large extent. If you have the proper insurance,  there are no problems.
At least this country has provided my daughter with a LIFE!!!  And no matter what the arguments are, what she is doing today and the kind of opportunities she is getting here both at her workplace and in her personal life, would not be possible in India.

One can avail of any opportunities, only when one is in good health.. dont you think so?

Today the treatment of EXJADE per month is 3500$ and my daughter's  co-payment is just 40$... so this proves that at least there is a way in this country.
Here at least no one will differntiate you because of your illness.. if you can work and work well, the sky is the limit.. anyone with any shortcoming can persue the great American dream. By that I DO NOT MEAN getting richer. It is the quality of life.

About mis-treatments in the USA.. well, people living here cannot even imagine the kind of mistakes that are made in India.. so they get affected by smaller stuff.I have made the rounds of several hospitals many many times in this country( USA) and I know the difference.

Please do not think that all Thals should come away to the USA or something like that...
This is solely my experience. I really tried very hard to find opportunities for my daughter in India. But she was rejected in so many ways, including the job offer from a large company, because she was honest enough to tell them that she had Thalassaemia and that she needed top be posted in a metro city.
It was also not easy for me to send her away so far from home.
But when I see her doing so well both professionally and personally, I do think that I made the right choice.
Yes India cannot be considered to be a Third World country .. but we still  have so many problems, that to take away the tag of a third world country  is still far off.


shikha mitra

wow
a very interesting question indeed. well, i have thal minor, my mum and dad both have thal minor, my brother has thal minor and so does my teenage son. we all experience alot of sweating, we all suffer from headaches and we all feel fatigue at times. i am married and i have a teenage son from a previous relationship. my parents did not know that they had thal minor when my brother and i were born. mum found out about 20 years after dad and us kids found out. i guess you could say that i am just an average aussie mum and wife who just goes about life like most other people. i have known about thal minor since i was a young child so i had my son tested as soon as i could. i don't plan to have anymore kids but i have told my son about his thal minor and i have stressed on him how important it is for him to get a partner tested before they ever decide to start a family. i am so lucky to only have thal minor, given that my parents both have it. it would be very sad if my son had a thal major child due to carelessness. apart from that, there is not much else to tell about my life with thal minor
theresa

"If only the third world countries made Desferal and proper blood available to the Thals, what a difference it would make!  Having a proper attitude is one thing and having to run around for blood and medicine ( just read the plight of Pakistan) is another thing."

 
"Even if half of these facilities were available in India and Pakistan for example, I am sure changing the attitude would be much simpler. Imagine a boy have to run around for bloood with an Hb of 5 !What if he does not find a donor in time?  How tough that can be.. it is the same in India too !! I had to hunt for my own donors."

shikha mitra

Dear Shikha aunty,

You  have been  making some excellent observations and points. Thank you for being outspoken and having the guts to admit the bigger picture.  I know some thals may find it demoralising to admit to all this...but facing realities is not = being pessimistic or negative; rather it is being really brave enough to see it as it is. Fact is even to change anything one has to first face it.  I agree with Poirot that thals have to get empowered or pull together etc. However even to make changes one has to first acknowledge the problems : that is:  undeniably, the very first step.  Denying the larger picture is not going to help change anything/anyone, 
but "getting real" about it just might touch the tip of this iceberg . 
By not even accepting there are problems we can never bring about change.

You are so right that when treatment becomes less stressful and less of a financial burden it is a lot  easier "Living with Thalassaemia".

 As you and I know that is not the case for most people in India. NO use burying our head in the sand about it. I still see and know about a lot of children that are not even getting proper transfusion due to the lack of funds of their hapless parents, and ever so many taking blood without filters and worse getting reactions. The care for some is better no doubt, but the exceptions do not prove the rule.

 Sorry to say  >> not enough caring doctors, who know enough about thalassaemia, to go around either...can count em on fingers.   
Also btw ....how will there be "mass screening" without Government involvement     I find this very much a big enough issue.    Right up there with not just malaria ,... but cancer and AIDS !!


 Kudos to you for being so vocal and able to share your experiences with us.    

Let 's hope we all have the courage to face reality as it is and not just "our own myopic reality".  :smile2

Cheers,
Shilpa.
 

Hi Shilpa

Yes the basic problems are so huge in India, that one wonders where to begin. So we see each parent just struggling to keep their child alive than think of the bigger picture of  helping others.So I guess each one of us  will just  have to get educated about Thal and try and accept the given conditions and then get on with our lives to the best of possibilities.I have faced this reality for 30 years.. things are better no doubt in the form of availibility of filters, washed blood etc.. but at what price? How many can still afford all that?

We have to face the real picture ......and the Govt. will do nothing unless there is serious lobbying.. They have other priorities.
Maybe the Delhi Thal association can  take some steps since they are sitting in Delhi and have renowned doctors on their panel. It is good to oraganise Seminars and attend conferences all over the world, but we just got to lobby at the Govt. level to get some real results.

All the very best to you Shilpa at all times.. just grab whatever opportunity comes your way and you will see all things will fall in their own place. All problem does have a solution in time!!


shikha (aunty)

Shikha,

Don't let people get to you with their comments. Success speaks for itself and there is no doubt that your tremendous efforts have paid off for your daughter. Not only that, but a positive attitude has been instilled in your daughter and you should feel very good about that. You have done what we hope all parents will do, and that is to attend to the needs of the children and never say I can't do it. And you are right. We need a massive lobbying effort to get through to government, but perhaps the old lobbying methods are not the most effective. In today's world, it is essential to get the attention of the media if you are also going to get the attention of the government. I am thrilled when I am told that in some Indian movies, thalassemia plays a role. We have to get the public eye and this is one way to do it. You and Shilpa have both suggested that we find a way to get thal on Oprah and that is a fantastic idea. We have to take every advantage we can to promote our cause. Nothing is too big or too small if we put our minds to it.

On another note, I hope we can keep our conversations here civil. Some uncalled for things were said, and that can only lead to resentment. I'm sure your daughter also did not feel the comments were warranted and really, she is the only one suited to comment. We are here to help each other so please let's stay positive.

In today's world, it is essential to get the attention of the media if you are also going to get the attention of the government. I am thrilled when I am told that in some Indian movies, thalassemia plays a role. We have to get the public eye and this is one way to do it. You and Shilpa have both suggested that we find a way to get thal on Oprah and that is a fantastic idea. We have to take every advantage we can to promote our cause. Nothing is too big or too small if we put our minds to it.

Yes, here is a link Link Mentioning Awareness of Thalassemia in Movie where we can find information on a Indian Movie - Salaam Namaste in which there is a mention of Thalassemia so that the general public is aware of it(through the movie)

http://bsnl.in/entertainment.asp?intNewsId=54801&disstyle=block&daysbefore=1

and here is the quote's of the director
Siddharth Anand, director, Salaam Namaste, "I came across thalassemia while reading up on issues about pregnancy for my script. Further research convinced me that it would be a good idea to introduce the thalassemia motif as a social message. But even I was not aware of the impact till organisations working for the cause barraged me with calls and mails congratulating me. Some even requested that they wanted to put up stalls outside the halls screening the film and distribute pamphlets that elaborated on the issue."

-Narendra

Thanks Andy... yes I guess this debate can go on for ages and there is really no point in useless arguments..
All we can do is stay positive and hope for the best.. so just did a little modification to my posting..  :smile2

shikha

hi everyone!

andy, this is a great question. i think my life is as normal as it could be. i went to school and then to uni to study for by bachelor's degree. had lots of fun. now i work in a private university and am still having fun everyday. i'm married and i'm thankful for such a supportive and loving husband. my family is great and my friends are great too. i just celebrated my 30th birthday and can still remember the tale my mum told me when i was 17. she said that the doctor who diagnosed me when i was 2 years old said that i might not live to see my teens. well, goes to show that with the miracles of modern medicine and lots of faith, anything is possible.

of course, not everything is a bed of roses, but i'd rather focus on the positive.

sometime in the future, i would like to have my own family. that's something to look forward to....