Discussion Forums > Announcements
New Book about Thalassemia (Cooley's Anemia)
Canadian_Family:
--- Quote from: Sharmin on March 03, 2009, 05:50:26 PM ---Canadian Family thank you so much for sharing what you have read with us. I am still waiting to receive my copy - but it has been so nice to read your comments.
I have much respect for Dr. Bank - after knowing him for 10 years and learning what a kind and caring person he is. I do hope that his prognosis about the life span of thalassemia patients proves to be wrong however. Dr. Vichinsky's opinion on this is that thalassemia patients, with full compliance, can live a full life span. Perhaps, here is where the problem lies - many thals are not compliant and as soon as things go wrong they completely lose control of the disease. If thals keep their iron levels down to begin with - if problems (such as antibody issues) occur then the problem will not spiral out of control. In this way, Dr. Bank's prediction is correct. We realize this when we try to get certain families to take proper precautions, or even join this site. Some people don't take the time, that is so unfortunate.
My hope is that with proper transfusion/chelation and supplements thals should be able to live a full life. Dr. Vichinsky mentioned that he has 50 year old patients, who did not enjoy the medical advancements that we do these days - therefore our children have much more hope of living into their fifties and beyond. What has and will continue to separate the survivors from those that unfortunately succumb to this disease is compliance. Recently, a thal major became a grandfather - to me this is encouraging. I have thal major friends who are in their 40s and they have children - and they show no signs of slowing down. It has been so hard reading this 'expiry date' for years, I hope that it does not have to apply anymore.
Our goal is a group is to increase the life span of every thal patient that comes to us for help - and my goal as a mother is to dedicate my life to preventing this disease from claiming my son as a victim. My prayers are that thalassemia will not beat us - and that we are able to get rid of thalassemia.
If genetix pharmaceuticals has stumbling blocks I hope that they are able to defeat them - and those that they cannot defeat - perhaps Errant Gene or some other group using stem cells can overcome these mountains.
Thanks again Canadian Family god bless all of our children :hugfriend :hugfriend
Sharmin
--- End quote ---
Sharmin,
Your post is nothing but the truth.
Regards
Andy Battaglia:
Even where treatment is available, patients often do not comply and this does lead to a lower survival age. In a place like the Maldives where non-compliance is usually related to social issues, where the majority of male thals feel that they are not wanted by their own society, we see how it is more than medical care that is required to keep people alive. An understanding of the complete impact of thalassemia from physical to mental and emotional is needed if we are to understand why the average life expectancy of thalassemics is still far too short. Yes, we have the ability to help thals live long lives but we also must convince them it is worth it, and in many places, only a change in public attitudes will bring this about.
Sharmin:
I think there is a lot to be learned from this book in terms of really understanding the disease and the research that is being done to treat it. It is also a reality that regardless of medical advancement some patients are not in environments where treatment is either not accessible or the social environment is not conducive to receiving proper treatment. It is also a truth that other people due to personal attitude or lack of information will not seek proper treatment. For this reason, thalassemia being a disease requiring stringent maintenance and compliance will claim many lives when compliance is not there.
Members of this site represent a group of people who are proactive and compliant. We are a group of people who are constantly learning how to better treat this disease. There are members on this site, who despite residing in countries that are less technologically advanced, are doing far better than some patients residing in North America. There are patients who are transfused at the same hospital as my son – who have ferritins of 5000-7500 – can you imagine in this day and age living in North America how this can happen? Most of us would be devastated if our children’s hg were to be higher than 1800! In fact, the goal for many of our members is to have ferritin levels below 1000. Today, with combination therapy – desferal, L1, exjade and hopefully starch desferal hopefully this will become easier. Even a decade ago ferritins below 500 were unthinkable for transfused thals – today we have a number of members who have ferritins below 500. These changes are very recent – the effects of these advancements for COMPLIANT patients will be much better – but difficult to measure at this time. Even patients who have been compliant with dfo in the past are benefiting even more now with combination therapy –(patients like Smurfette.) And these advancements are coming at an exponential rate so if you take excellent care of yourselves – you can take full advantage of these advancements.
A doctor once told me that there is a chance that my son can outlive ‘normal’ children because he is closely monitored for any changes in his health, he gets excellent nutrition, supplements and exercise – at a time when the ‘normal’ children are eating junk food, watching tv and playing video games. He also told me that my son is healthier than me – because his hg is mostly higher than mine. This applies to the children of other members here as well. Our hope is to get our adult patients who have had high ferritins in the past here too! So much is reversible with proper chelation.
Although, very unfortunately the average life expectancy of thals is not very long – as a group I do not think that the members of this website bear any resemblance to average thalassemia patients. The information that we are receiving from Andy and the top scientists in the world on this site will provide us with what we need to give ourselves and our family members every advantage.
Zaini:
--- Quote --- Although, very unfortunately the average life expectancy of thals is not very long – as a group I do not think that the members of this website bear any resemblance to average thalassemia patients. The information that we are receiving from Andy and the top scientists in the world on this site will provide
--- End quote ---
:agree
Zaini.
Andy Battaglia:
Well said Sharmin. As I told you recently, let's work at creating some super-thals, real superheroes who defy all odds. Nothing in lfe comes without work and yes, it takes a lot of work and dedication, but a healthy thal is possible, and I agree that with the complete treatment program that provides both medications and supplements along with any appropriate psychological counseling, we will see patients who are actually healthier than their health-ignoring peers.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version