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54208 Posts in 5701 Topics by 5802 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Thalassemia and Why We Need Your Help  (Read 9396 times)
Andy
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Will thal rule you or will you rule thal?


« on: September 06, 2010, 04:32:30 PM »

At the request of one of our members (love and prayers), I have written this for all to use. Please feel free to use it privately or publicly to encourage donations to thalassemia awareness and prevention programs and to a cure. I would appreciate credit for the text when this is used.


Thalassemia and Why We Need Your Help

Thalassemia is the most widespread single gene disorder on earth. It is estimated that at least 300-400 million people on earth are carriers, and this estimate is most likely conservative. When two carriers have a child, there is a 25% chance with each pregnancy that the child will acquire a thalassemia gene from each parent and be a thal major, dependent on regular blood transfusions just to survive. The cost of care and treatment continues to rise as new treatments have allowed thalassemics to live much longer and become productive adults. Thalassemia treatment has made huge strides in recent decades and patients who once could expect to live no longer than twenty years are now living into their 50’s and 60’s, with an ever increasing life expectancy. However, this has come at a great financial cost that cannot be sustained as countries develop and patients who were once left to die are now treated, creating new costs for developing and developed nations alike. Frankly, our world cannot afford to properly treat every thalassemic on earth, and many get very basic care at best. Solutions must be found and this will also require funding. However, one must be aware that spending on prevention and a cure will reduce long-term treatment costs, so there is a positive trade off.

To make any progress, we need your help. Awareness and prevention programs cost money to introduce and sustain, but these programs can pay for themselves eventually, by a reduction in the number of thal major births. Creating awareness about the need for testing before marriage, paying for testing, and educating the public about this necessity will all require funding. Nations already struggling with the cost of treatment may balk at spending even more money on awareness and testing, but without these programs, they will never be able to afford the cost of treatment for the patients who continue to be born annually.

We are also now very close to a cure for thalassemia by gene therapy. Currently, bone marrow transplants (BMT) can cure thalassemia in some patients, but most do not have a matching donor, and for those who do, it is a harsh procedure with definite risks to the life of the patient. Gene therapy would be suitable for most patients, but it is under funded even though it shows tremendous potential. Even when perfected, gene therapy will still require a high cost for each patient, although this will be lower than the cost of the long-term treatment currently available.

Why should you care? Thalassemia genes are quite widespread and even though some ethnic groups are more affected, there are no guarantees that it is not in your own background. If you are a carrier, it is easy to see why you should care, but for those who believe there is no possibility of thalassemia in their background, why should you care? I can say a lot about our duty to each other as humans, but those who understand this will not ask why in the first place, so let me bring this to a level that affects all. No society on earth can afford this care for thalassemics. It is not sustainable in the long term. Regardless of where on earth you live, your nation will be affected by the rising costs of caring for those affected by thalassemia and this cost will affect all in terms of overall costs for medical care and the total national expenditures on health care. Of course, these costs are borne by us all in terms of taxes and health insurance payments. It is in our own selfish interests to work towards preventing the births of new thals and also curing those who are already with us. By donating to organizations working to prevent new births of thals through education and testing, by donating to those working on new treatments and cures and even by doing your own part to spread awareness, we can all have an effect. Every time a couple is tested and this leads to no thal major being born, society saves the cost of care for another thal child. In the US, this care costs more than $100,000 per year per patient, and rises every year. We have to stop the increase in thal births and we have to find a cure. Doing so, will save us all a lot of money in the long term and will save countless people the suffering that thalassemia brings.

Donate and make a difference in the world.


Andy Battaglia
www.thalpal.com
« Last Edit: September 06, 2010, 04:41:54 PM by Andy » Logged

Andy

All we are saying is give thals a chance.
love and prayers
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« Reply #1 on: September 07, 2010, 02:58:57 AM »

thank you!
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joyce
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with my baby jovy..


« Reply #2 on: December 13, 2011, 06:13:44 AM »

Thank you too..

I'll spread it in my blog- of course the credit is yours.
Thanks for talking behalf of the Thalas patients and parents..
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ldominguez1022
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« Reply #3 on: February 07, 2012, 04:29:01 AM »

Thanks for posting this. It is very inspiring 

- L
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DrRajpal
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« Reply #4 on: October 02, 2015, 02:39:03 AM »

At the request of one of our members (love and prayers), I have written this for all to use. Please feel free to use it privately or publicly to encourage donations to thalassemia awareness and prevention programs and to a cure. I would appreciate credit for the text when this is used.


Thalassemia and Why We Need Your Help

Thalassemia is the most widespread single gene disorder on earth. It is estimated that at least 300-400 million people on earth are carriers, and this estimate is most likely conservative. When two carriers have a child, there is a 25% chance with each pregnancy that the child will acquire a thalassemia gene from each parent and be a thal major, dependent on regular blood transfusions just to survive. The cost of care and treatment continues to rise as new treatments have allowed thalassemics to live much longer and become productive adults. Thalassemia treatment has made huge strides in recent decades and patients who once could expect to live no longer than twenty years are now living into their 50’s and 60’s, with an ever increasing life expectancy. However, this has come at a great financial cost that cannot be sustained as countries develop and patients who were once left to die are now treated, creating new costs for developing and developed nations alike. Frankly, our world cannot afford to properly treat every thalassemic on earth, and many get very basic care at best. Solutions must be found and this will also require funding. However, one must be aware that spending on prevention and a cure will reduce long-term treatment costs, so there is a positive trade off.

To make any progress, we need your help. Awareness and prevention programs cost money to introduce and sustain, but these programs can pay for themselves eventually, by a reduction in the number of thal major births. Creating awareness about the need for testing before marriage, paying for testing, and educating the public about this necessity will all require funding. Nations already struggling with the cost of treatment may balk at spending even more money on awareness and testing, but without these programs, they will never be able to afford the cost of treatment for the patients who continue to be born annually.

We are also now very close to a cure for thalassemia by gene therapy. Currently, bone marrow transplants (BMT) can cure thalassemia in some patients, but most do not have a matching donor, and for those who do, it is a harsh procedure with definite risks to the life of the patient. Gene therapy would be suitable for most patients, but it is under funded even though it shows tremendous potential. Even when perfected, gene therapy will still require a high cost for each patient, although this will be lower than the cost of the long-term treatment currently available.

Why should you care? Thalassemia genes are quite widespread and even though some ethnic groups are more affected, there are no guarantees that it is not in your own background. If you are a carrier, it is easy to see why you should care, but for those who believe there is no possibility of thalassemia in their background, why should you care? I can say a lot about our duty to each other as humans, but those who understand this will not ask why in the first place, so let me bring this to a level that affects all. No society on earth can afford this care for thalassemics. It is not sustainable in the long term. Regardless of where on earth you live, your nation will be affected by the rising costs of caring for those affected by thalassemia and this cost will affect all in terms of overall costs for medical care and the total national expenditures on health care. Of course, these costs are borne by us all in terms of taxes and health insurance payments. It is in our own selfish interests to work towards preventing the births of new thals and also curing those who are already with us. By donating to organizations working to prevent new births of thals through education and testing, by donating to those working on new treatments and cures and even by doing your own part to spread awareness, we can all have an effect. Every time a couple is tested and this leads to no thal major being born, society saves the cost of care for another thal child. In the US, this care costs more than $100,000 per year per patient, and rises every year. We have to stop the increase in thal births and we have to find a cure. Doing so, will save us all a lot of money in the long term and will save countless people the suffering that thalassemia brings.

Donate and make a difference in the world.


Andy Battaglia
www.thalpal.com

Sir i am ammazed to see the cost of thals care,
In the US, this care costs more than $100,000 per year per patient, and rises every year.

it was in 2010,
now it is 2015, what are the relevant changes sir.
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Andy
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Will thal rule you or will you rule thal?


« Reply #5 on: October 03, 2015, 09:09:02 AM »

The cost has only risen, due to the US medical industry. The cost that is billed to insurance companies for Exjade alone approaches $100,000 annually. The US medical industry is for the most part, corrupt.
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Andy

All we are saying is give thals a chance.
jsbhavsar
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« Reply #6 on: October 12, 2017, 09:11:47 AM »

Either of my mother's parents had beta thalassemia for sure. None of them were ever diagnosed of this nor anyone of them took folic acid or B12 or any tablet per se in their youth or old age. But, both my grandparents on my mother's side lived beyond age of 89-90.

My mother has been diagnosed beta thalassemia minor/trait since 1994 along with me. She never took folic acid daily or or monthly B12 for the first 23 years of the diagnosis. It is just that on my insistence from April-May this year I have asked her to minimum take Folic Acid 5mg per day and B12 shot in a month along with D3 supplement once per month.

Maintaining thalassemia is what is the real skill. I did not care for maintaining my thalassemia in the middle years from 1999 to 2017, I am paying heavily for it now. As my eyes are wide open due to hard lessons learnt in the last 7 months, I am now taking daily folic acid since Feb 2017 and taking monthly B12 shots, though it is too late I feel.
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