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
