The purpose of this website is to provide information which will result in improved quality of life and survival to thalassemia patients and their families. In order to accomplish this,the website addresses information necessary for patients, families, health providers and interested community members.
Elliott Vichinsky, MD
Director, Hematology/Oncology
Children's Hospital & Research Center Oakland
Thalassemia is the most common, inherited single gene disorder in the world.
Early comprehensive treatment has changed thalassemia from a fatal pediatric
disease to one in which patients live productive lives throughout adulthood.
Advances in treatment are exciting, resulting in the potential for cure
and improved quality of life. However, many patients never receive the information
needed to make educated decisions about treatment. Many ethnic groups are
unaware of their genetic risk of thalassemia and do not receive genetic
counseling or pre-natal diagnosis. Others have heard of pre-implantation
genetic diagnosis as a technique to achieve a healthy newborn, but do not
have access to objective medical information of its risks and benefits.
Thousands of patients receive medical care outside of specialized thalassemia
centers. These patients and providers need information concerning recommendations
for comprehensive screening tests, access to new research protocols and
treatment including transfusion therapy, new chelation therapy, stem-cell
transplantation, hormone replacement, heart disease, osteoporosis and hepatitis.
Quality of life for families and patients can be excellent with a future
including employment, marriage and children. To achieve this, families and
providers need information concerning psychological wellness, cultural issues
and counseling for family planning and marriage. In summary, this site should
provide the family and providers with necessary information to make informed
decisions and achieve optimal quality of life. It is our hope that by providing
electronic education about the disease, we can raise awareness, encourage
people to get tested for trait, and spread knowledge about comprehensive
treatment to the global community.
Thalassemia.com has been revised and updated for 2012.
