Articles
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.
Dr. Elliott Vichinsky: Comprehensive Medical Care in Thalassemia
Dr. John Wood: Pulmonary Hypertension and Good Cardiac Care
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).
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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