Finding out that your child has haemophilia can come as quite a shock, and at first you may wonder how you will be able to cope. Everyone needs time to adjust in order to:
- Come to terms with the bleeding disorder
- Learn how to live with and help your child thrive with the condition
- Know who to talk to or where to find support
There will be hurdles, but you will find your equilibrium.
While every family is different, you might like to consider these tips for coping with haemophilia that other parents have found helpful:
- It might not be easy to adjust at first, but with appropriate management and care, your child can stay as healthy as possible and grow up to be a confident and well-rounded individual.
- Haemophilia doesn’t have to rule your life or your child’s. Teach them how to safely explore the world and establish their boundaries, wherever possible. Your child’s Haemophilia Treatment Centre or the Haemophilia Foundation in Australia or New Zealand can offer some advice.
- Be wary of information you read or hear. Like many other health conditions, there are misconceptions and outdated information out there. Importantly, there is also no typical person with haemophilia. So, speak to your child’s Haemophilia Treatment Centre for trusted information.
- Knowledge is power. The more you understand about your child’s condition and how to manage it, the more in control you should feel.
- Liaise with your child’s school. Work with them to create a risk minimisation plan for your child. It may be helpful for the teachers to have a session with a nurse from your Haemophilia Treatment Centre.
- You might feel alone, but other families might be in a similar situation. Reach out to the Haemophilia Foundation (links in external resources section) for professional support and to be connected to a network of other families who understand what you are experiencing.
- Treat all bleeds early to avoid long-term joint damage. Ask your child’s Haemophilia Treatment Centre for help to develop a plan.
- It’s a parent’s instinct to direct all your energy into your child. Don’t forget self-care! Taking care of ourselves is the opposite of being selfish. It helps strengthen us and enables us to support our children better. Schedule time to continue the activities you enjoy and take some time out for exercise and relaxation.
More information about living with haemophilia based on age groups is available here.