Deciding what you want from haemophilia treatment

Deciding what you want from haemophilia treatment

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 that 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 you are 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 managing 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 does haemophilia-related pain and/or mental health issues impact my ability to do what matters to me? 
       

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.

Deciding what you want from haemophilia treatment

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 that 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 you are 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 managing 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 does haemophilia-related pain and/or mental health issues impact my ability to do what matters to me? 
       

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.