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Fast Facts for Patients: Beta Thalassemia
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
- Cover
- Contents
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What is beta thalassemia?
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Types of BT
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Why isn’t the hemoglobin made properly?
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What causes beta thalassemia?
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What are genes?
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Who gets BT?
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Inheriting beta thalassemia
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How do gene changes cause beta thalassemia?
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Types of beta thalassemia
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Other types of inherited blood disorders
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Screening and diagnosis
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Newborn screening
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Diagnostic testing
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DNA tests
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Pregnancy screening
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Genetic counseling and pregnancy
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Beta thalassemia trait
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What is the risk if I have children?
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What can I do to help myself?
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Should I tell other people?
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Beta thalassemia intermedia
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Signs and symptoms
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Beta thalassemia major
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Signs and symptoms
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Why is treatment important?
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Complications
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Bone changes
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An enlarged spleen
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Gallstones
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Blood clots
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Benign masses
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Leg ulcers
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Iron-related complications
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Iron overload
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Pregnancy-related complications
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Treatment
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Non-transfusion-dependent beta thalassemia
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Transfusion-dependent beta thalassemia
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Blood transfusions
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Chelation therapy
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Stem cell transplant
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Stimulating the production of red blood cells
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Treatment for complications
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Enlarged spleen
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Gallstones
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Blood clots
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New developments in treatment
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Clinical trial phases
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New treatments for beta thalassemia
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Gene therapy
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Improving red blood cell health
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Reducing iron absorption
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Living with beta thalassemia
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Have treatment when you need it
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Your diet
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Keep fit for healthy bones
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- Asking for help
- Guide to words and phrases
- Useful resources
- Copyright
- 出版地 : 德國
- 語言 : 德文
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