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Offline Sharmin

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« on: May 02, 2007, 03:08:28 PM »
It is heart breaking to hear about young people who have died because of thalassemia major.  It is even more heart breaking to see how their families have suffered.  You can feel the pain in their words.  I wish them all peace.

What I cannot understand is why young people are still dying from thalassemia.  It seems that these patients were being transfused regularily and using desferal from a young age.  I had come to believe that if thalassemiacs are adequately transfused, compliant with chelation and receive proper medical attention then they should live a near normal life span.  I felt a sense of comfort from this, for my son's sake and for all of the thal patients.  I felt that with proper care they would all live long, near normal lives. 

At this point I am confused, my heart aches for the families who have lost their loved ones and I am hoping more than anything that there is hope for a long and healthy life for other thal patients.  Can someone please help me understand some of this?  Andy, do you know why things sometimes turn for the worse for some thals? 

Sharmin ??? ???


Offline Narendra

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Re: ???
« Reply #1 on: May 02, 2007, 03:18:51 PM »
I think a lot of factors that come into play. I hear COMPLIANCE to Iron Chelation is the most important one. For your son's age or for younger children, NOT doing Iron Chelation is NOT an option. We as parents give it to them with heavy heart and they take it. But, I think as they grow up into their teenage, they have things in their own hands and teens(as we all know) are less COMPLIANT. When they do NOT comply, the damage starts to be done.

Another factor that could be into play is that Thalassemia was quite unknown 30 or 40 years ago and there was NOT much known about Iron Chelation and why it should be done(sadly in some parts of the world, that is the case even today)

Blood Transfusion also carries the risk of being infected by viruses, which the modern testing of blood has dramatically reduced

Other members might have thoughts to add


Offline Andy Battaglia

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Re: ???
« Reply #2 on: May 02, 2007, 04:02:35 PM »
Narendra is right Compliance with chelation is the number one reason thals die early. It is the absolutely most frustrating part of working with thals! The reason Shilpa and I were invited to Maldives for International Thal Day in 2006 was to stress compliance to the patients there and give them reasons why they should comply. It is absolutely essential that thals be shown they can have a normal life if they take care of themselves. When there is no hope for a normal life, compliance becomes easy to slack on.

The other half of this problem is desferal itself. It is such a tough task to comply with daily and it is not easy for everyone to take as many experience reactions ranging from irritation to allergy, and the nuisance of taking for 12 hour periods makes it easy to skip, especially for people in their teens and twenties. Hopefully, the age of oral chelators will greatly improve compliance.

There are other factors that can cause serious problems with thals but compliance has been and remains the number one reason why thals die young. It is also important to note what is hopefully now in the past. Thals have often been infected with hepatitis from transfusions but now blood is tested alomst everywhere so this should become a thing of the past. It is what cost Lisa her life.

All we are saying is give thals a chance.


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