This booklet aims to help you understand beta thalassemia (BT) so you can talk to your medical team about your condition and its treatment. BT is a blood condition you’re born with. It affects your red blood cells. BT is a disease caused by changes (mutations) in genes that are passed on from parent to child. You have BT when you inherit a gene change from both of your parents. There are two types of BT disease – BT major and BT intermedia. A person can also be a healthy carrier of BT without having the disease. This is called BT trait (or BT minor). Treatment depends on the type of BT disease you have. People with BT major will require regular blood transfusions throughout their life. New treatments for BT have recently been approved or are being tested in clinical trials around the world, with promising results. Table of Contents: • What is beta thalassemia? • What causes beta thalassemia? • Types of beta thalassemia • Screening and diagnosis • Beta thalassemia trait • Beta thalassemia intermedia • Beta thalassemia major • Complications • Iron-related complications • Treatment • Treatment for complications • New developments in treatment • New treatments for beta thalassemia • Living with beta thalassemia • Asking for help
