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.