Laurice Compagno Levine, a surviving victim of thalassemia disease and spokesperson for the Thalassemia Outreach Program at Children’s Hospital Oakland, traveled recently to the Italian Catholic Federation from Children’s Hospital in Oakland to present a comprehensive program on her experiences as a victim of the disease. She made the presentation to the members of the St. Bede the Venerable Roman Catholic Church branch 374 of ICF.
Thalassemia disease is a genetic blood disorder that if left untreated can be deadly by age 5 (treatment now enables people to live into their adulthood). Every year it takes the lives of thousands of children under 5 from Italy, Greece, Africa, East Indies, and countries of southeast Asia including Vietnam, Laos, Thailand, Singapore, Philippines, Malaysia, China, Burma and Indonesia, and Middle Eastern and East Asian countries. Victims also include children with Armenian, Georgian and Azerbaijani heritages. Those afflicted are not able to make enough hemoglobin, which causes severe anemia. The disease is also known as Cooley’s anemia.
“Because more babies are born each year with Thalassemia, it is becoming a growing healthcare concern,” said Levine who is a buoyant and upbeat victim of the disease. Her life story is a story of painful transfusions, the removal of her spleen and two episodes of congestive heart failure before the age of 25.
Levine noted that testing is available to detect the trait. It involves having a single blood sample drawn. The tests can identify most types of Thalassemia: hemoglobin electrophoresis with quantitative hemoglobin A2 and hemoglobin F; CBC, complete blood count; iron studies (free erythrocyte protoporphyrin, lead, ferritin, and/or other iron studies). A patient with thalassemia requires routine blood transfusion every two to four weeks. As a result of frequent blood transfusions, the body is at risk for iron overload, which is toxic and, if left untreated, can lead to premature death. In Levine’s struggle, she has blood transfusions every two weeks and follows a daily regimen to remove iron from her body.
Branch 374 of ICF at St. Bede has been an ongoing contributor of funds to help the researchers at Children’s Hospital in Oakland conduct on going research to find a way to treat and cure this disease. Work is also jointly underway at Children’s Hospital in Los Angeles. Since the 1990s, the national organization of ICF has contributed over $1.4 million from its many branches in districts in California, Nevada, Arizona, and Chicago.
Levine is available to speak to any organization that wishes to know more about thalassemia. She can be reached at (510) 428-3885, ext 5427.