By Kuo, Kevin H.M.

This booklet helps you understand alpha thalassemia (AT) so that you can talk to your medical team about your condition and its treatment. AT is a blood condition you are born with. You have to inherit a gene change from both parents to have AT. If you inherit a gene change from one parent, you are a carrier but don’t have the condition. If your partner is also a carrier, you have a chance of having a child with AT. AT is most common in people with ancestry from Southeast and South Asia, Africa, the Middle East and around the Mediterranean. There are two pairs of genes involved in AT – you may have one, two, three or four gene changes. There are also different types of gene changes – the gene can either be missing or damaged. How severe your AT is depends on the number and type of gene changes you have. AT major (four gene changes) is typically fatal before or shortly after birth without intervention. It remains a lifelong condition but can now be managed with treatment. Table of Contents: •What is alpha thalassemia? •What causes AT and who gets it? •Genes and genetic inheritance •One gene change •Two gene changes •Three gene changes •Four gene changes •Screening and diagnosis •Genetic counselling •Symptoms and treatment •Clinical trials; New treatments for AT •Living with alpha thalassemia