The Haemochromatosis Handbook is an essential resource for people affected by genetic haemochromatosis, their families and healthcare professionals. The handbook is available exclusively to our members, as part of their membership package.

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The Haemochromatosis Handbook is now in its 6th Edition (February 2020). First published in 2002 in partnership with The Australian Haemochromatosis Society, it has been kept up to date as knowledge of the condition has progressed.

With approximately 80 pages packed full of information and useful guidance on such topics as genetics, treatment, symptoms, diet and much more, it is invaluable for patients. All of the information contained in the handbook has been endorsed by our medical advisers.

Chapters of the handbook are:

  • INTRODUCTION
  • HAEMOCHROMATOSIS
  • What is Haemochromatosis?, The Inheritance of Haemochromatosis, How common is Haemochromatosis?
  • IRON OVERLOAD
  • Iron Overload and Organ Damage, Major Complications, Incidence of Complications, Mortality, Factors that influence Iron Overload, Four Stages of Haemochromatosis
  • GENETICS (INHERITANCE)
  • Terms, Types of GH, Chances of Passing on the Condition, Family Health Tree
  • TESTS AND DIAGNOSIS
  • Tests for Iron Status, Normal Range for Iron Levels, Gene Test, Biopsy, Non-invasive Tests
  • VENESECTION
  • Phases of Venesection Treatment, Iron Removal Phase, Maintenance Phase, Chelation Therapy, Effect on Symptoms
  • MANAGING YOUR VENESECTIONS
  • Ask Your Doctor, Manage your own Records, Lifestyle, Helpful Hints, Complications that may occur, Communicate with your Doctor, Blood Donations, Blood Transfusions
  • IRON ABSORPTION AND BALANCE
  • Regulation of Iron, Loss and Replacement of Iron, Quantities of Iron, Iron Retention in Haemochromatosis, Haemoglobin: Structure and Function
  • DIET AND HAEMOCHROMATOSIS
  • Dietary Iron: Haem Iron and Non-haem Iron, Changes of Diet to Reduce Absorption of Dietary Iron, Raw Oysters and Clams
  • THE LIVER
  • Some Liver Functions, Tests to Determine The Health of the Liver, Liver Function Tests, Tests to monitor the Liver once Damage has Occurred, Bilirubin, Blood Proteins, Cirrhosis, Hepatomas (Hepatocellular Carcinoma), Blood Test for Hepatoma, Portal Hypertension
  • THE HEART
  • Cardiomyopathy, Symptoms, Treatment
  • JOINT DISEASE
  • Osteoarthritis, Chondrocalcinosis, Treatment for Arthritis, Osteoporosis
  • ENDOCRINE SYSTEM
  • Diabetes Mellitus, Gonadal Failure, Hypogonadism (males), Thyroid Disease in Haemochromatosis, Depression and Mood Swings
  • ANAEMIA
  • Anaemia associated with Haemochromatosis, Other Types of Anaemia
  • NEONATAL HAEMOCHROMATOSIS
  • JUVENILE HAEMOCHROMATOSIS
  • SOURCES OF ADDITIONAL INFORMATION