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New Book about Thalassemia (Cooley's Anemia)
Sharmin:
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
Zaini:
I also am unable to understand Dr Bank's point of view,i also think that with proper transfusions and compliance with chelation our kids will have a very fair chance to live a normal life span.
Zaini.
Andy Battaglia:
I never understand why people say that about thal life spans, especially when as Sharmin said, there are patients alive today in their 50's (I know several) and they did not have the advantages that are here today when they were growing up. I truly believe as Dr Vichinsky does, that patients who are serious about compliance with all aspects of treatment will live long lives.
T @ r ! Q:
Science always comes up with facts and figures to put in their books. I think what Dr Banks is forgetting while discussing the disease is the human being who is going through the disease and the family who is watching their beloved suffering.
Canadian_Family:
Dr Arthur Bank is basically a scientist and I found in the book he does not want to talk about anything else other than what he knows today or making a claim. He did mentioned his recent talk with one of the higher official of the CAF where he said"I did not want to raise the false hope'. For example, later he did remotely mentioned about the thalassemia patient who became grandfather but he stopped making a statement about the full life span of thalassemia.
I think the statement of him re. 30s or 40s is worldwide and is based on today’s figure (he did admit the huge difference of medical care between developed and under developed countries). He mentioned about the very good quality of life for thalassemia these days. Well that is his personality.
Tariq,
I fully agree with your post.
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