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New Book about Thalassemia (Cooley's Anemia)

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Manal:
Yes Canadian family, it is very clear from the tiltle.. its better to think positive

manal

Sharmin:
Canadian Family,

Thank you for sharing.  Chapter 2 is one that I personally feel afraid of reading as well.  It is sad to know that parents who were in our shoes in earlier times had to go through such heartbreak.  I hope that within the next decade things will change drastically enough - that they will no longer have to suffer at all.

Sharmin

Andy Battaglia:
That reality about thalassemia was what drew me to help in the first place. The thal reality that Lisa grew up with was dismal and colored her own beliefs about her life. In her mind, thals were very lucky to make it to 30 years old. I had no idea back then that there were already thals in their 40's. Perhaps if some of these people had been more open to sharing and helping, I may have been able to do something for Lisa. I do know that what I have learned over the years could have made a difference to her health, but it's too late for that but I can help others and do my best to do so.

I want to say that the old reality is no more and that reading about it can give you different perspectives, and I hope one it does give everyone, is the perspective on how much thal treatment has advanced in such a short time and not only does that mean thals can expect to live far longer, but also that we can all expect more improvements and better lives for thals. I know it's sad to read about how it was but don't let it affect how you approach each day. Please remember that Dr Bank has lived through much himself and I am sure he has lost many friends to thalassemia and there is no way he could write a book about thal without remembering those who are gone and providing the perspective on how much different things are today. From one who has lost many dear friends to thal, I will say that it is so sad and at times it is hard to go on and stay involved, especially when I realize there are people I know who will die because they refuse to work hard enough to stay alive. I still don't know what to do when people won't chelate enough and probably never will know what to do, but I have learned to help them in any way I can, even if just to help them find some acceptance of their decisions and some peace of mind. Meanwhile, I hope you all realize what a difference you make to your children and how much your constant intervention does for them. There are people here whose kids would no longer be with us if the parents had not stayed on top of situations and acted when necessary. Take some strength in what you have shown already and know you will always make a big difference in the lives of your kids.

Zaini:

--- Quote --- In her mind, thals were very lucky to make it to 30 years old
--- End quote ---

This thinking is still present,my own aunt who lost her daughter to thal back in 80s,still had the same perspective about thal,when i told her about new treatments and technology and how it had helped thal's life span and over all health,she was like "yeah may be" .


--- Quote ---   I hope you all realize what a difference you make to your children and how much your constant intervention does for them
--- End quote ---

Credit goes to this forum Andy,it has helped us and encourage us in learning ways in which we can help our kids,it amazes me when i tell people about this forum and they don't join it.

Zaini.

Canadian_Family:
Chapter 3, 4, 5 and 6 tells the stories of families in early 60s to 80s.....

Part 2

Dr. Arthur Bank describes how he came with his conclusions and different mutations of beta thalassemia major (he talked about his experiments) in 60s, 70s and 80s. He talked about the management of thalassemia in modren days. Sadly, he admitted that eventually this condition despite all medical advances would kill its victim. He still thinks the lifespan of 30s to 40s at this time.
I found Dr Arthur Bank is inconclusive re. the cure of thalassemia at this time. He seems of the view that there is a lot to be done...you climb one mountain and see another mountain waiting for you. He talked about different treatment options (we all know, fetal hemoglobin etc.).

Still reading.

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