Close this search box.
Home  >  Bleeding disorders  >  Haemophilia  >  Living well with haemophilia

Living well with haemophilia

Health and wellbeing are important to keep in mind. This can mean taking the opportunity to enjoy what life has to offer, maintaining a healthy lifestyle and good relationships and participating confidently in all sorts of activities, including play, travel, sports, career and other activities that are sustaining or inspiring.

Your child’s Haemophilia Treatment Centre can help your child thrive by keeping their daycare, preschool, school or sporting club updated with useful information about supervising a child with haemophilia. The Haemophilia Team can help put appropriate supports in place so that they can make the most of participating in school excursions and camps. 

Maintaining regular health checks with your general practitioner (GP) is important to looking after your health as a whole. GPs can treat a range of illnesses, provide appropriate health screening over your lifetime and refer you to other services, when needed.

Ongoing advances in haemophilia treatment are continuing to make great improvements to the quality of life of people with haemophilia. However, at various stages of life, issues can still arise for a person with haemophilia or their family that impact on their ability to enjoy their life. 

It could be as simple as knowing how to arrange the necessary documents and treatment product to travel. 

Or for parents, how best to help a child to play and have fun while dealing with the potential for bruises and bleeds. Parents may be looking for ways to manage the fear of injections. Children might be feeling anxious about their haemophilia diagnosis as they grow up and want to explore their world and how they fit in it. 

Or it could be dealing with more complicated situations and emotions such as feeling overwhelmed by diagnosis, or that you or your child is somehow ‘different’ from others or taking the next step in a personal relationship. Parents sometimes feel guilt for passing the gene alteration onto their child and if this is not addressed it can have significant consequences for their relationship or how they feel about the bleeding disorder.

There may be government allowances, extra healthcare support and financial assistance that are available to you or your child.

At any stage you may need some extra information or support.

Haemophilia is part of life but doesn’t need to overshadow it.

What do people with bleeding disorders suggest?

You are not alone

  • Stay in contact with the Haemophilia Treatment Centre. The Haemophilia Team is there to help and can give you advice or talk over any problems or concerns.
  • The Treatment Centre can also refer you to other counselling and support services.
  • You will have support to discuss any of your issues, emotions or difficulties.
  • Keep in touch with your Haemophilia Foundation. State and territory Haemophilia Foundations have newsletters and social media to keep members updated as well as social activities such as community camps, men and women’s groups and grandparents’ groups where people can meet, talk about common experiences and enjoy a meal or a day out. 
  • Take your children with haemophilia to Foundation events, eg camps. It gives them the opportunity to meet other children with bleeding disorders, be around other children who understand what it’s like and make lifelong friends.

Be informed and aware

  • Know about your or your child’s condition and how best to manage it.
  • Develop a relationship with the Haemophilia Team to keep in touch about your or your child’s wellbeing and any health issues that might arise. 
  • Keep up with the latest information on treatments and services. 
  • Learn to advocate for yourself or your child – and don’t be afraid to ask questions.

Control and manage risks

  • You or your child can live a normal active life, but everyone’s experience is different. Know about your limits and plan around them.

With knowledge and planning most people live well with haemophilia and lead active and independent lives – from childhood into their senior years. 

Date last reviewed: 1 September 2023

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.

Skip to content