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Thalapedia Goes Live!

The Thalassemia Support Foundation is proud to announce the launching of a new site to help provide information to the Thalassemia community.  Thalapedia is a website created to provide information for patients, families and friends of individuals affected by Thalassemia. Our goal is to help provide context and some perspective to a lot of the information posted online. We hope that you will find the information to be useful and current.

www.thalapedia.org

Shades of Gray

by Marientina Gotsis

I was born with beta thalassemia trait. My father carries the gene. My brother carries the gene. Half of my dad’s family also carries the gene but my parents did not know my father had thalassemia until they had to test in order to get a marriage license. This was before separation of church and state in Greece and the church required genetic screening. The mystery behind my father’s endless craving for steak and sleep was solved.

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Patient’s Perpective: Uncommon Threads

by Abby Thorelson 

Whether you are meeting a new thalassemia patient for the first time or picking up where you left off with one from last year, there is an instant deep connection that ties us to each other. Some may see it as an affliction, but I am beginning to see it as a special mark that inspires us to strive to be extraordinary rather than to settle for mediocrity.

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From a Parent’s Perspective

by Vincie DiLorenzo 

Paul was diagnosed with thalassemia major when he was four months old. At that time, he looked pale, but otherwise appeared to be healthy. Blood tests would prove otherwise.

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Dr. Elliott Vichinsky: Comprehensive Medical Care in Thalassemia

During the conference we captured Dr. Elliott Vichinsky's Powerpoint presentation as well as the audio. View his presentation! **A Java enabled web browser is required! Read the rest of this entry »

Dr. John Wood: Pulmonary Hypertension and Good Cardiac Care

During the conference we captured Dr. John Wood's Powerpoint presentation as well as the audio. View his presentation! **A Java enabled web browser is required! Read the rest of this entry »

Iron Overload: Extremely Harmful, but Preventable!

by Titi Singer, MD
Hematologist
Children’s Hospital and Research Center at Oakland

Treating severe forms of thalassemia with regular blood transfusions has been an important advance in the management of thalassemia over the past 30 years. Transfusions are given in order to correct anemia (low hemoglobin level) and minimize the other clinical manifestations of the disease, such as bone changes and enlarged liver and spleen. In order to accomplish these goals, most patients require blood transfusions every three to four weeks with a blood amount of 10–15cc/kg (approximately two to three units of blood).

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Care for Adult Thalassemics

by Laurice Levine, MA, CCLS
Thalssemia Outreach Coordinator
Children’s Hospital and Research Center at Oakland

(Click here to see Laurice’s talk at the 8th Cooley’s Anemia Symposium)

Thalassemia is a rare and complex disease which in the past took the lives of children prior to their teenage years. Thankfully, due to improved technology and medical advances, the lifespan for thalassemics now extends into adulthood. Consequently, serious consideration must now be given to adult care.
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