You are the most important member of your healthcare team

Would you be surprised to know that most people living with hemophilia A can increase their strength and everyday activities, and even decrease chronic joint pain, by working with their healthcare team to develop a personalized approach to managing the disease? This is even more important if you already have joint damage.

The experience and expertise of your healthcare team brings so much value to your hemophilia A management. However, it is important to remember that YOU are an essential member of your care team and have an important role to play.

Doctors, nurses, physiotherapists, social workers, and counsellors can offer you guidance and advice, but they can only effectively do so if they have a clear understanding of how hemophilia A affects your:

  • Daily life
  • Personal goals
  • Ability to be physically active

Openness to explore new possibilities for improvement in hemophilia A management and quality of life will encourage helpful discussions with your healthcare team.

Think about your goals for the next few weeks, months, and years. You can use these goals to start a conversation with your healthcare team about your care and treatment. For example, you might want to start by explaining why you have chosen your goals, or asking your healthcare team questions like:

  • Do you think these goals are achievable for me?
  • How long do you think it might take me to achieve them?
  • What precautions will be necessary, if any?
  • If you do not think these goals are achievable for me, what do you think we could achieve?

Consider sharing this resource with your healthcare team as you work together to improve your daily living, by designing a personalized approach to managing your hemophilia A based on your lifestyle needs.

In order to organize and relay this important information to your healthcare team, you can prepare yourself by first doing some self-discovery and reflection on your current health and lifestyle. Consider making some notes as you respond.

Before completing your self-assessment, take a few moments to reflect on the following as it relates to your routine visits with your healthcare team:

  • Do you do anything specific to make sure your appointment is valuable to you?
  • Do you feel that the healthcare team focuses on the same things that are important to you?
  • Do you ever wish you had mentioned something and either didn’t, or forgot to?

When you think of the number of bleeds you have had over the past year or so, do you have any particular opinions or feelings? (i.e., I’m not surprised; I’m not very happy about it; This is typical or unusual for me; etc.)

Do you ever find yourself thinking you would like to improve your general health in any of the following ways?

Physical fitness


Weight management

Mental health

There is progress every year on hemophilia A management. How important is it for you to keep up to date on this knowledge?

Keep these thoughts in mind as you work through the Personalize Hem A self‑assessment.