Managing your care

Deciding what you want from haemophilia treatment

Make the most of your doctor appointment

Haemophilia treatment is about more than just managing bleeds. This article helps you define your treatment priorities so you can feel confident in discussing these with your care team.

Sharing with your doctor and healthcare team what matters most to you means that you can work together towards achieving the things you find meaningful.

Everyone is different, and we all have different things that matter to us and motivate us. Try to identify what these are for you.

Enjoying my life and connecting with others

Being able to do the things that bring joy, pleasure and fulfilment (such as hobbies, sports, travel, fitness/exercise, career)
Growing and strengthening relationships and connections that are important (including a partner, friends, family, community)

Try thinking about

How happy are you with your current lifestyle and close relationships?
Does your health limit how you spend your free time?
How confident do you feel in social settings and when meeting new people?
Do you feel able to talk about your haemophilia in your workplace?

Living independently and managing my health

Being able to take care of yourself and manage your care independently (such as administrating treatment, keeping to a treatment schedule, recovery after a bleed)
Looking after your mental and physical wellbeing (including pain, mobility and joint health, mental health and mood)

Try thinking about

What is something I do now that I'd like to keep doing?
What is something that I'd like to start doing?
In what ways does my haemophilia and/or treatment impact my ability to do what matters to me?
In what ways do haemophilia-related pain and/or mental health issues impact my ability to do what matters to me?

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Adults

Renato from Slovenia

"And from the time that I am monitoring my factor levels, I live quite a liberated life."

Finding community support & tools library

Discover your liberation goals

What does liberation mean for you? What are the things you want to do or keep doing? Complete the Liberation Map quiz to reflect on aspects of your wellbeing that you aspire to improve so you can discuss them with your doctor and get the support you need to pursue your goals.

Person wearing glasses, looking at the computer screen

Haemophilia and you

Haemophilia, severity and bleeds

Living with haemophilia may come with certain challenges such as the risk of bleeding and joint pain. Understanding your haemophilia is the first step towards managing the risks and living a life with fewer limitations.