Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Andy Battaglia on April 01, 2009, 05:04:31 AM
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The life of the thalassemic in today's world is far different than it was just a few years ago and one can expect that this trend will continue at a rapid pace in the coming years. Sixteen years ago, when I was first beginning to learn about thalassemia, I asked Lisa Cammilleri, the founder of thalpal, how long a thalassemic could expect to live. She told me that the mid-thirties was a good life expectancy and she really had little faith she could live beyond that age. She passed away shortly after her 34th birthday. And what I saw in those years only reaffirmed that this was typical, even though some thals had somehow managed to live beyond that age and were well on their way to age 40 and even 50! This was remarkable, but for the most part, I continued to see patients living only into their 30's at most and often only into their mid to late 20's. Incredibly, during the past 15 years there has been a major change in this projection of life expectancy.
I often hear parents and patients say "we have waited so long for such and such and it seems like it never happens." Yes, it took ages for an oral chelator (Exjade) to be marketed in the US, but another oral chelator (Kelfer) has been used in India for close to 30 years and has kept many people alive. I will be very happy to see a dear friend in India turn 50 this year and I know another is rapidly approaching that landmark. Things have not been equal for those in Asia, so these are true inspirations for all. And yes, a cure other than bone marrow transplant, gene therapy, is still in trials, even though things do look promising in that direction in the future. But, is a cure really as important if treatment reaches the stage where thalassemics can expect to live full and fairly normal lives if they fully comply with their treatment programs? What I have discovered over the past few years and I know Dr Vichinsky has confirmed this with patients, we really don't know how long thals can live because we don't really see any obstacles to having a normal lifespan if patients do fully comply. As understanding about the various aspects of thalassemia becomes clearer, we will see that a normal life is the expectation and not the exception, and that this progress will rapidly change the standard of care throughout the entire world.
What are the basics of staying alive? We can break this down into the three basics; maintaining hemoglobin level, iron chelation and protecting the body from the damaging effects of free iron. Of course, there is much else involved with maintaining and monitoring the health, but these are the basic issues that must be addressed if a thalassemic expects the body to function normally for a lifetime. One of the biggest changes in the approach to thal treatment over the past two decades is the recognition that maintaining as close to normal an Hb level as possible is key to normal growth and development and the old theory of keeping the Hb as low as possible to minimize iron intake, has fallen along the wayside. Because of advances in chelation, it is now believed to be far better to take adequate blood and enjoy the benefits of having a sufficient oxygen supply to the organs and all of the body. Not only does this enhance physical development but is also has the added benefit of allowing thals to feel much better, which allows them to carry on with their daily lives. Secondly, not only has chelation advanced but the understanding of what needs to be done for proper chelation and which combination of chelators work best, has been expanded. Patients who were once thought to be beyond help are now being helped with aggressive chelation programs and medical intervention where necessary, but even patients with congestive heart failure can now be saved if it is caught early enough and the damage that has been done to their heart by iron, is now known to be reversible. Even the approach to when to start chelation is changing and I predict that chelation will be starting along with the first transfusions in the future, as it has been observed that this can help prevent free iron from destroying red blood cells. In addition to new chelators, and several more are currently in various stages of development, methods to make chelators work better and faster are also in development. When will all this be available? Sooner than you may think. If you think about it, you will realize how much is different today than it was a few years ago and advancements in treatment are coming very fast. We are seeing patients literally turn their lives around by aggressively attacking their problems in a serious manner, with the realization that their efforts will be rewarded with good health. Thirdly, the body and its glands and organs need to be protected from the dangerous effects of iron oxidation in the body. We all know iron oxidation when we see it on a car. It's called rust and as Neil Young wrote, "rust never sleeps", and in the body, this is also the case. Oxidation from iron and other radicals is a constant and preventing the damage that this oxidation can cause is becoming a new focus of treatment in thalassemia and this group has been a leader in spreading the word about the many benefits of taking antioxidants and various other supplements that are necessary to supply the high amount of nutrients required by the thalassemic. We talk in depth about this topic elsewhere on the thalpal.com website so I will not repeat all that here.
What we have been seeing over the past couple years is nothing short of amazing. We are seeing patients, who 5 years ago would have been told they had little chance of surviving, completely turn things around and put themselves back on the road to good health. I now realize that there really is no reason that anyone should tell a thal to have negative expectations as far as quality and length of life. We really don't know because so much is new, but if these basics are complied with from birth to death, we will be seeing many more thals celebrate the births of their grandchildren. Stop waiting for when will something happen. It's already happening and it's only going to get better.
I have devoted much of the past sixteen years to furthering my own understanding of thalassemia and its treatments, and sharing this knowledge with as wide an audience as possible through this website, through social media and in person, and helping to guide others to expand this effort with their own, and these selfless efforts by all involved, our moderators and all contributing members, have been quite effective, and I think I can say for all with full confidence that there is nothing more rewarding than hearing the reports of those who have followed what they have learned here and have totally changed their lives. Our work and our efforts to reach out to all the thalassemia community have made and are making a big difference in the lives of many and this work will continue as more people embrace the concept of being a thalpal, sharing a positive message about the lives of those who live with thalassemia. Let's be the leaders in creating awareness of this new reality where thalassemics do intend to stay alive.
Updated 2/20/18
Andy Battaglia
©2009, 2018
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I second that, Andy. What you say is really true. I am well over forty and I expect to live as long as non-thals do. Of course, I have complied to the fullest and will continue to do so. That is the only solution- and an efficient doctor to give you the correct treatment, of course.
Lena.
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Yeah to that! :hugfriend :cheer
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This is a great post Andy - I wish that every thal would read it. I think that you have played a tremendous role in keeping many thals healthy and alive because although these treatments are available - not everyone would have known about them - were it not for you.
We would not have made an appt with Dr. Vichinsky, baal may not have started combination therapy, Umair has brought his iron levels down miraculously. The doctors and researchers may be finding treatments - but you have played the most significant role - which is to teach the patients about it. You have also created an environment for us to learn from and support one another - and most of us have becoming an extremely well educated group. We are educated about thal and health in general thanks to this site - all I can say is WOW!! I think that this post ties all of the facts together - that with full compliance a full and healthy life span can be achieved for thals - with or without an immediate cure.
:thankyou2
Sharmin
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Great Post by Andy,
This website is a blessing to all (Thal or non Thal). I have seen people joining and asking questions even if they are not thal. There were members who joined for only 4-5 posts to ask a particular question/problem, got their answers from the group. It’s okay to come, join, ask your question and be a stranger. We are glad we made a difference in somebody’s life.
The great attributes of this website is that everybody listens and answer or atleast give encouragement. There are friends who are remembered. There is joy and sorrow (everybody is in it). There is knowledge and effort to bring change.
Andy started this group and we cannot commend him enough for his dedication. He is in our hearts. Where do you find selfless people like him these days. I just can’t say enough but ‘Thank you Andy’.
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Thank-you Andy
You are one in a million :clap :clap :clap
The mad one
:rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Guesssssssss :wink
Kathy
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Hello People,
how are you all,
Andy this is really a great post to boost our positive energy..
I totally agree that thal patients can live a very long and beautiful life as a normal person can..
and I believe we all thalpal can make a better place to live for us and others,
we all are going to live a very strong and healthy life..
thank you so much for giving us this platform where we can
share our experiences with each other.
this site is great
take care
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Great Post by Andy,
This website is a blessing to all (Thal or non Thal). I have seen people joining and asking questions even if they are not thal. There were members who joined for only 4-5 posts to ask a particular question/problem, got their answers from the group. It’s okay to come, join, ask your question and be a stranger. We are glad we made a difference in somebody’s life.
The great attributes of this website is that everybody listens and answer or atleast give encouragement. There are friends who are remembered. There is joy and sorrow (everybody is in it). There is knowledge and effort to bring change.
Andy started this group and we cannot commend him enough for his dedication. He is in our hearts. Where do you find selfless people like him these days. I just can’t say enough but ‘Thank you Andy’.
:exactly :agree :lovethissite
Zaini.
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But, is a cure really as important if treatment reaches the stage where thalassemics can expect to live full and fairly normal lives if they fully comply with their treatment programs
I always had this thought and always wondered what will be my choice???????????????
manal
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Until there is a safe cure without long lasting repercussions, treatment may actually be the better option. Khalifa, whose son has had a successful bone marrow transplant but also went through three years of close calls with death, recently told me that if anyone asked him about a BMT today, he would run away screaming. I don't think he'd want to go through all this again. With the advancements in treatment today and what is coming, it's easy to make a case for staying with the treatment option.
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andy, who are you? god, can we clone you? :biggrin
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Let's not clone Andy only once, but a few times, :wink so, we can try to have one of him with us for as long as possible.. :hugfriend
How selfish we're thinking now.. :biggrin
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Andy,
Would you allowed it when I use this text for my own website? Ofcourse it will say "credits to Andy from thalpal.com" Maybe I will translate it since not everyon speaks/read English.
I was in shock last weekwhen I get an email responds for my 14 year old fellow pk def. patients. She rarely get blood transfusions, because her parents want her to have less as possible (who not) but she lives on a too low hgb. She onle gets them when she gets ill (<3.5 ml/l) She has diabetes. She don't do chelation therapy. She don't want to do that, She says she can live with her high iron (1200. its the first time i have a lower ferritin), Her parents dont seems to want her on chelation therapy and her doctor is ok with it. I dunno of she has told her to restart with those meds. She has done desferal therapy in the past btw, but then stopped when she get diabetes. (I think that is how it went.)
I know you can not save everyone, but I want her to life like we do. I really think you should not stay at such level. She is so young.
Best wishes, Dore
p.s. the others are (a lilttle) better with getting deironed. :smiley
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Hi Dore,
Yes, you can use it as long as you give credit and link to the original post.
I am quite happy that this thread is so well appreciated. I really think that we can do a lot to change the perception of blood disorders and the ways that treatment has advanced, which now allows people to have decent lives. I think that our efforts can change the ways that patients, families and friends and even the medical professionals view these disorders.
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I am quite happy that this thread is so well appreciated. I really think that we can do a lot to change the perception of blood disorders and the ways that treatment has advanced, which now allows people to have decent lives. I think that our efforts can change the ways that patients, families and friends and even the medical professionals view these disorders.
:yeahthat :agree
Actually this site has already changed so many lives,now what we ought to do is that we have to spread this knowledge and awareness on individual level also,by informing the people we know and we meet in our daily lives.
Zaini.
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Those of us who have stumbled upon and religiously followed this advice are very fortunate. I also hope to spread this advice by directing others to this website and conveying messages of hope and the benefits of complying to treatment and supplementation.
Dore, I am so glad that you are finding success with the chelation, and that you are helping others with what you have learned. That is wonderful. I hope that your friend benefits from Andy's message. You are right, maintaining proper hg levels and chelation are the key to good health.
Sharmin
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All of what Andy said is like a gospel....they should convey information like that when the families are informed of the diagnosis....
It makes it easier to deal with it once we realise that it is not as bad as it is made out to be...My husband was devastated to be told by some people that children with thal rarely cross their teens...it so clogged his logic/rationality that it took him a long time to get out of it! I am sure many of us go through things like this...but then luckily we do land up here!
Infact being a medico myself, I realise that I wasnt aware much of this condition until my son was diagnosed. When we studied pediatrics in college, thal was just about 2 pages of the textbook and it did not give too good a prognosis of thal!
Information comes either in too simple forms or too complicated ones....so a lay person is left nowhere with that...something like this is what one craves for...
Many a times I also feel that the doctors we consult are biased/prejudiced due to their personal views/monetary gains when they advise us. What one needs at such times is a non-beneficial view where there are no other motives involved...sometimes one is not even aware of what options are available and that there is even a choice to be made...
I wish this site is available to as many as possible for updating themselves and sharing their emotions...
Thank you all....
This virtual thal family is the best family anyone could ever have!
Madhavi
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I am 31, have blood transfusions every 2 weeks. I play football with fully fit adults and compete well I think.
Nobody knows how long they will live for, whether they are thalassaemic or not.
The most important thing is to make the most of your life whilst on this earth.
My advice is to do be as active as possible.
Good luck and god bless.
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Thanks Saj. It's good to hear you're doing well and that is great advice. Stay as active as possible. It makes a big difference to your health and also your enjoyment of life.
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Nobody knows how long they will live for, whether they are thalassaemic or not.
The most important thing is to make the most of your life whilst on this earth.
My advice is to do be as active as possible.
The only intention should not be to stay alive but RATHER LIVE ACTIVELY AND HAPPILY EVERY MOMENT OF LIFE ........ b motivated without worrying about irreversible damages, look forward ... by forward means not how u shud live in this world but in HEREAFTER ...
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Andy,
Thanks for creating this thread. Very good post - a clarion call, in fact!
Cheers
Poirot
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I still have not been able to share your post, Andy. But I will do it in April. And being a jurist I know how to pay the credits correctly. I haven't been around a lot due a lot of circumstances. Maybe I should hang this message upon my dresser. It will be a good way to start the day.
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Hi Andy
I agree with you, one has to be positive and with high degree of self discipline and to leave in a country were the treatment is affordable or provided free of charge.
Stavros Melides
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Much gratitude, Andy, for your tireless efforts to empower thals and pals, to improve our lives by always bringing forth new information and encouraging the development of this virtual support group. I've recommended this website to a whole bunch of ppl and hoping they had time to come read.
Best to you :)
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Great Post by Andy,
This website is a blessing to all (Thal or non Thal). I have seen people joining and asking questions even if they are not thal. There were members who joined for only 4-5 posts to ask a particular question/problem, got their answers from the group. It’s okay to come, join, ask your question and be a stranger. We are glad we made a difference in somebody’s life.
The great attributes of this website is that everybody listens and answer or atleast give encouragement. There are friends who are remembered. There is joy and sorrow (everybody is in it). There is knowledge and effort to bring change.
Andy started this group and we cannot commend him enough for his dedication. He is in our hearts. Where do you find selfless people like him these days. I just can’t say enough but ‘Thank you Andy’.
:yeahthat :exactly
really nice and summarized post.... :thankyou2 andy for all your efforts... :)
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Many thanks from my heart also, Andy!
Beeing an grandpa actually in my family and also with the care for thals in Germany und Sardegna/Italy but a youngster with this community, I for myself have read a lot of details in the last few days. All this details will help to optimize my advice for all the inquiries wich come to my desk every week.
The slogan of our association in Germany actually is: "Tell! Help!"
A wonderful day to everyone
Juergen
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Hi Dore,
Yes, you can use it as long as you give credit and link to the original post.
I am quite happy that this thread is so well appreciated. I really think that we can do a lot to change the perception of blood disorders and the ways that treatment has advanced, which now allows people to have decent lives. I think that our efforts can change the ways that patients, families and friends and even the medical professionals view these disorders.
Yes Dear Andy Bro.,
Your efforts really matter for us. In fact it is changing the ways.. You and other members are doing superb job. Keep it up dear.
:flowers :bighug :lovethissite
Thank YOU.
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The life of the thalassemic in today's world is far different than it was just a few years ago and one can expect that this trend will continue at a rapid pace in the coming years. Seven years ago, when I was first beginning to learn about thalassemia, I asked Lisa how long a thalassemic could expect to live. She told me that the mid-thirties was a good life expectancy and she really had little faith she could live beyond that age. She passed away shortly after her 34th birthday. And what I saw in those years only reaffirmed that this was typical, even though some thals had somehow managed to live beyond that age and were well on their way to age 40 and even 50! This was remarkable, but for the most part, I continued to see patients living only into their 30's at most and often only into their mid to late 20's. Incredibly, during the past 5 years there has been a major change in this projection of life expectancy.
I often hear parents and patients say "we have waited so long for such and such and it seems like it never happens." Yes, it took ages for an oral chelator (Exjade) to be marketed in the US, but another oral chelator (Kelfer) has been used in India for over 20 years and has kept many people alive. I was very happy to see a dear friend in India turn 40 this past year and I know another is rapidly approaching that landmark. Things have not been equal for those in Asia, so these are true inspirations for all. And yes, a cure other than bone marrow transplant, is still not very close to fruition, even though things do look promising in that direction in the future. But, is a cure really as important if treatment reaches the stage where thalassemics can expect to live full and fairly normal lives if they fully comply with their treatment programs? What I have discovered over the past few years and I know Dr Vichinsky has confirmed this with patients, we really don't know how long thals can live because we don't really see any obstacles to having a normal lifespan if patients do fully comply. As understanding about the various aspects of thalassemia becomes clearer, we will see that a normal life is the expectation and not the exception, and that this progress will rapidly change the standard of care throughout the entire world.
What are the basics of staying alive? We can break this down into the three basics; maintaining hemoglobin level, iron chelation and protecting the body from the damaging effects of free iron. Of course, there is much else involved with maintaining and monitoring the health, but these are the basic issues that must be addressed if a thalassemic expects the body to function normally for a lifetime. One of the biggest changes in the approach to thal treatment over the past few years is the recognition that maintaining as close to normal an Hb level as possible is key to normal growth and development and the old theory of keeping the Hb as low as possible to minimize iron intake, has fallen along the wayside. Because of advances in chelation, it is now believed to be far better to take adequate blood and enjoy the benefits of having a sufficient oxygen supply to the organs and all of the body. Not only does this enhance physical development but is also has the added benefit of allowing thals to feel much better, which allows them to carry on with their daily lives. Secondly, not only has chelation advanced but the understanding of what needs to be done for proper chelation and which combination of chelators work best, has been expanded. Patients who were once thought to be beyond help are now being helped with aggressive chelation programs and medical intervention where necessary, but even patients with congestive heart failure can now be saved if it is caught early enough and the damage that has been done to their heart by iron, is now known to be reversible. Even the approach to when to start chelation is changing and I predict that chelation will be starting along with the first transfusions in the future, as it has been observed that this can help prevent free iron from destroying red blood cells. In addition to new chelators, and at least three more are currently in various stages of development, methods to make chelators work better and faster are also in development. When will all this be available? Sooner than you may think. If you think about it, you will realize how much is different today than it was a few years ago and advancements in treatment are coming very fast. We are seeing patients literally turn their lives around by aggressively attacking their problems in a serious manner, with the realization that their efforts will be rewarded with good health. Thirdly, the body and its glands and organs need to be protected from the dangerous effects of iron oxidation in the body. We all know iron oxidation when we see it on a car. It's called rust and as Neil Young wrote, "rust never sleeps", and in the body, this is also the case. Oxidation from iron and other radicals is a constant and preventing the damage that this oxidation can cause is becoming a new focus of treatment in thalassemia and this group has been a leader in spreading the word about the many benefits of taking antioxidants and various other supplements that are necessary to supply the high amount of nutrients required by the thalassemic. We talk in depth about this topic elsewhere on this site so I will not repeat all that here.
What we have been seeing over the past couple years is nothing short of amazing. We are seeing patients, who 5 years ago would have been told they had little chance of surviving, completely turn things around and put themselves back on the road to good health. I now realize that there really is no reason that anyone should tell a thal to have negative expectations as far as quality and length of life. We really don't know because so much is new, but if these basics are complied with from birth to death, we will be seeing many more thals celebrate what one 50 year old thal I know did in October-the birth of a grandchild. Stop waiting for when will something happen. It's already happening and it's only going to get better.
I have devoted much of the past six years to furthering my own understanding of thalassemia and its treatments, and sharing this knowledge with as wide an audience as possible through this website and in person, and helping to guide others to expand this effort with their own, and these selfless efforts by all involved, our moderators and all contributing members, have been quite effective, and I think I can say for all with full confidence that there is nothing more rewarding than hearing the reports of those who have followed what they have learned here and have totally changed their lives. Our work and our efforts to reach out to all the thalassemia community have made and are making a big difference in the lives of many and this work will continue as more people embrace the concept of being a thalpal, sharing a positive message about the lives of those who live with thalassemia. Let's be the leaders in creating awareness of this new reality where thalassemics do intend to stay alive.
True Andy, we intend to stay alive, nay not just alive but alive like any other normal human being.
In today's modern world, life is not easy for anyone. And it is not at all easy for the thalassemics.
I grew up as a sickly child. I was small compared to my cousins and friends. I used to pained when others looked at me with sympathy. But I was determined to prove everyone wrong. I studied and did a tough professional course, fell in love, got married to a person who accepted and loved me in spite of my thal status(which I never hid from anyone). I always wanted to be a mom and I became one. physically lot of things are not possible for us but I wanted to prove that if you have a heart with love in it, then nothing is impossible. You can conquer the world and have everything you desire.
Life is difficult. I chose not to go out to work coz I know my health would not permit it. But I don't have regret- I am looking after my child and family like any of my friends- in fact much better. True, all this has been possible, because of the advancement of medical science but for me, it was my intension to stay alive. As a thalassemic that the intension to stay alive was so deeply rooted in my mind that it is because of this intention I have survived to see this day.
Good that through this forum, we can atleast speak out our emotions which otherwise are diffult to share with others- not because they would not understand but because on our part, it would not be a good thing to bother them. Friends will not understand and the family feels stressed somewhere deep within their heart, worrying about their thal family members. (I have not even told my child as to what i go through. Let her grow, then will or else she start worrying too). Keep Shining, keep smiling. There is much more to life than to worry about our health. Everyone in today's world is suffering from something or the other, so why worry for it is not in our control. LEARN TO LIVE
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True Andy, we intend to stay alive, nay not just alive but alive like any other normal human being.
In today's modern world, life is not easy for anyone. And it is not at all easy for the thalassemics.
I grew up as a sickly child. I was small compared to my cousins and friends. I used to pained when others looked at me with sympathy. But I was determined to prove everyone wrong. I studied and did a tough professional course, fell in love, got married to a person who accepted and loved me in spite of my thal status(which I never hid from anyone). I always wanted to be a mom and I became one. physically lot of things are not possible for us but I wanted to prove that if you have a heart with love in it, then nothing is impossible. You can conquer the world and have everything you desire.
Life is difficult. I chose not to go out to work coz I know my health would not permit it. But I don't have regret- I am looking after my child and family like any of my friends- in fact much better. True, all this has been possible, because of the advancement of medical science but for me, it was my intension to stay alive. As a thalassemic that the intension to stay alive was so deeply rooted in my mind that it is because of this intention I have survived to see this day.
Good that through this forum, we can atleast speak out our emotions which otherwise are diffult to share with others- not because they would not understand but because on our part, it would not be a good thing to bother them. Friends will not understand and the family feels stressed somewhere deep within their heart, worrying about their thal family members. (I have not even told my child as to what i go through. Let her grow, then will or else she start worrying too). Keep Shining, keep smiling. There is much more to life than to worry about our health. Everyone in today's world is suffering from something or the other, so why worry for it is not in our control. LEARN TO LIVE
Such a nice thing Rashmi!
You're doing it the right way. :)
Best,
-P.
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Yes Rashmi,
We can definately share our feelings...here... :biggrin
It is so nice to be in touch with you.. You are brave
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Hi,
I am new in this forum and don't know much how is it working ,
I have a son , who is 6 years now .
But having beta minor, I went to dr but they told he absolutely fine , I can see him exhausting , not willing to do anything .
I heard that wheat grass juice is good for all kind of thelsmiA, so started it and I found lots of changes in him,
But then I was told that it is not good for kids so I stopped it And again he feels so tired .
Plz could anyone suggest me that should I continue wheatgrass for him ?
Thanks
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As I said in my message, wheatgrass is a simple food and is perfectly safe, and very nutritious. Anyone saying otherwise is spreading ignorance and should be ignored.
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even patients with congestive heart failure can now be saved if it is caught early enough and the damage that has been done to their heart by iron, is now known to be reversible.
Where can i find further information about this topic? The reversibility part sounds really interesting. Thank you :-)
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myaki,
Congestive heart failure in thals is due entirely to iron overload in the heart. Removal of the iron by a strong chelation program will reverse the congestive heart failure, once the heart is clean of iron.
I have attached a file to this reply, Cardiac Function and Treatment, that talks in depth about the heart in thal major. This is a short pertinent excerpt.
8. Why Treatment of HF in TM Is Different
8.1 Introduction
Although the main aspects of the diagnosis and management
of HF are well known, the acute and chronic care of HF that
complicates TM differ in a number of important ways. First,
the age of the population being treated is much younger.165
Second, it is a toxic cardiomyopathy related to myocardial
iron accumulation, so that there is the important prospect of
complete resolution of ventricular dysfunction with treatments
directed at iron removal rather than directly at myocardial performance.
Third, there may be important comorbidities that
require recognition and specific treatment in their own right.
8.2 Reversibility
Iron cardiomyopathy is the most common and feared complication
of TM, but because it is caused by iron toxicity, it is
reversible.