Haemophilia: A GUIDE for parents of A NEWLY DIAGNOSED child
A comprehensive guide for parents. It aims to help parents understand all the issues they will encounter when their child is diagnosed with haemophilia. It also covers growth and development, parenting a child with haemophilia, exercise and sport. Information on support and contact details of services are also included. (Oct 2017)
Bleeds - Emergency checklist card
Steps on what to do if your child has symptoms that concern you.
Includes what you will need to do to prepare if you are going to hospital for review or treatment.
There is also space on the card to put your emergency contact details.
Download the card - PDF 80KB
Recognising a bleed card
A checklist of what to look for to recognise if your baby or small child is having a bleed.
Includes a diagram showing the body areas where bleeds are particularly serious.
Download the card - PDF 587KB
Title pages; how to use this guide
The title page and acknowledgements, along with instructions on how to use this guide.
Download the PDF - 308KB
Chapter 1 - Your child has haemophilia
The first things parents need to know when their child is diagnosed with haemophilia:
Download the PDF - 3.5MB
- Frequently asked questions
- Support and services
- Understanding your feelings
Chapter 2 - Understanding haemophilia
The basics about haemophilia for you and your child:
Download the PDF - 3.8MB
- Blood clotting and bleeding
- Types of haemophilia and severity
- Having more children
Chapter 3 - Bruises and bleeds
Understanding the signs and symptoms of haemophilia in a small child and what to do about them:
Download the PDF - 1.7MB
- First signs of haemophilia
- Bleeds and types of bleeds
- Preventing bleeds and complications
Chapter 4 - Treatment and health management
Explaining what treatment and care for a child with haemophilia involves:
Download the PDF - 3.8MB
- Comprehensive care
- Factor replacement therapy
- Rehabilitation and physiotherapy
- Health management
- Partnerships for good health
Chapter 5 - Growing up with haemophilia
How can you support your child in their development as they grow up?
Download the PDF - 3.4MB
- Letting kids be kids
- Behaviour and self-esteem
- Family and friends
- Babysitters and carers (and a sample of an information sheet for them)
- Childcare and school
- Camps and travel
Chapter 6 - Movement, exercise and sport
The benefits of physical activity for children with haemophilia and how to exercise safely.
Download the PDF - 2.4MB
- Movement and exercise
- Haemophilia camps
HTC and Foundation contact details
Click here to find contact details of Haemophilia Treatment Centres (HTCs)
Click here to find the contact details of state/territory and national Haemophilia Foundations
Chapter 8 - Glossary
Wondering what the terms and abbreviations mean? This glossary explains them in plain language
Download the PDF - 84KB
Chapter 9 - More information
References and further reading
Download the PDF - 58KB
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This education resource was funded by the donations of many individuals to Haemophilia
Foundation Australia and an education grant from Pfizer.
Date last reviewed: 21 December 2020
Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information.
This information may be printed or photocopied for educational purposes.