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Newly Diagnosed

Haemophilia a guideHaemophilia: 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:

  • Frequently asked questions
  • Support and services
  • Understanding your feelings

Download the PDF – 3.5MB

Chapter 2 – Understanding haemophilia

The basics about haemophilia for you and your child:

  • Blood clotting and bleeding
  • Types of haemophilia and severity
  • Inheritance
  • Girls
  • Having more children

Download the PDF – 3.8MB

Chapter 3 – Bruises and bleeds

Understanding the signs and symptoms of haemophilia in a small child and what to do about them:

  • First signs of haemophilia
  • Bruises
  • Bleeds and types of bleeds
  • Emergencies
  • Preventing bleeds and complications

Download the PDF – 1.7MB

Chapter 4 – Treatment and health management

Explaining what treatment and care for a child with haemophilia involves:

  • Comprehensive care
  • Factor replacement therapy
  • Rehabilitation and physiotherapy
  • Health management
  • Partnerships for good health

Download the PDF – 3.8MB

Chapter 5 – Growing up with haemophilia

How can you support your child in their development as they grow up?

  • 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

Download the PDF – 3.4MB

Chapter 6 – Movement, exercise and sport

The benefits of physical activity for children with haemophilia and how to exercise safely.

  • Movement and exercise
  • Sport
  • Haemophilia camps

Download the PDF – 2.4MB

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

Want to be updated when any parts of this guide are revised? Register for updates here

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.

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