Thalassemia Patients and Friends

Discussion Forums => Announcements => Topic started by: pdilorenzo on July 14, 2007, 06:04:58 PM

Title: Dr. Elliott Vichinsky's Talk Online
Post by: pdilorenzo on July 14, 2007, 06:04:58 PM
Hi All,

During the 2nd Annual TSF conference we were fortunate enough to get the
Powerpoint presentation and audio of the speakers. We just posted Dr. Elliott
Vichinsky's (Childrens Hospital Oakland) talk titled "Comprehensive Medical
Care in Thalassemia". This is an excellent talk and you should certainly watch
it! The first slide is a little long, because I am introducing him. But you can
skip it by pressing the forward button at the bottom of the slide.

Dr. John Wood's (Childrens Hospital Los Angeles) talk titled "Pulmonary
Hypertension and Good Cardiac Care" is still available to watch.

Also, please sign up to our mailing list so you can get our e-newsletter that will
keep you up to date on future postings and events!

2nd Annual TSF Conference Link:


Paul DiLorenzo, President
Thalassemia Support Foundation

Title: Re: Dr. Elliott Vichinsky's Talk Online
Post by: Andy Battaglia on July 14, 2007, 07:11:01 PM

Thanks so much for posting the link to this excellent talk. I encourage everyone to listen to this presentation. There is no better care for thalassemics than the comprehensive care discussed in this talk.

Some interesting points in the lecture include:

Up to 50% of thalassemia intermedia patients are treated as major.

"Too many doctors are fixated on a number." Hemoglobin level should not be the only criteria for deciding to transfuse.

Transfusing patients should keep Hb above 9.5, but it should be based on a case by case basis on whether it should be kept even higher.

Transfusion errors are the number one cause of transfusion related deaths. Patients should always check to make sure they are receiving the right patient's blood.

The longer the infusion time, the more effective desferal works. If you use L1 take it more than once per day (3 times daily), so that it stays in your system. L1 is superior to desferal at removing heart iron and also restoring heart function. White cells must be checked weekly when using L1. As long as a chelator is active in your body, it is working to reduce free iron. Exjade works equally as well as desferal in most patients. Combination therapy with desferal and L1 works better than either drug individually. Combination trials using desferal and exjade have begun. Starting dose for exjade is 20 mg per kilo of body weight. Some patients are taking as high as 40 mg per kilo body weight, once their bodies are used to exjade.

Splenectomy can lead to clotting and infections and should be a carefully considered procedure before being done. Splenectomized patients should be on anti-coagulants and antibiotics.

Some thal major patients remained transfusion independent after hydroxyurea use. A new drug, decitabine, shows great promise for inducing fetal hemoglobin and trials will begin soon.

Diabetes can be reversed in thal patients if caught early and treated with proper chelation.

The bottom line for survival is chelation compliance. Whichever chelator you use, must be used regularly. Excuses will not keep you alive but chelation will!

Please listen to this presentation. Its value is immense.

Title: Re: Dr. Elliott Vichinsky's Talk Online
Post by: Manal on July 14, 2007, 08:36:45 PM
That was a perfect presentation, thank you so much for sharing

Title: Re: Dr. Elliott Vichinsky's Talk Online
Post by: §ãJ¡Ð ساجد on July 15, 2007, 12:05:50 AM
Nice sharing!

Thanks :thumbsup

Title: Re: Dr. Elliott Vichinsky's Talk Online
Post by: Zaini on July 15, 2007, 03:04:25 AM
Thanks for summarizing the presentation , Andy,

As i was unable to see it due to my slow connection   :-\


Title: Re: Dr. Elliott Vichinsky's Talk Online
Post by: sydneygirl on July 15, 2007, 04:55:51 AM
That was valueable & usefull information & points,thanks for the summary Andy!
Its much appreciated. :wink