Non-Adherence and Hemophilia: Reporting from the WFH Congress

Why is non-adherence still a problem for many hemophilia patients? There’s a very simple answer here: it’s because hemophilia can be difficult to manage and hard to live with.
There’s not just one answer to solve the problem of non-adherence. Every single patient is different and experiences the illness in a different way, so generalizing is pointless.

That said, there are steps that can be taken which are likely to reduce non-adherence issues:

  • Have a conversation with your doctor. Discuss your personal experience with the illness and be blunt about the type of treatment you think you would be easiest for you to manage.
  • If the patient is a child, encourage them to participate in the above conversation. Remember, this is about them and eventually they’ll be making all medical decisions on their own.
  • Remind yourself, or your child, that most treatment doesn’t have an immediate effect. Monotonous short-term treatment is what produces long-term positive effects (even though you can’t see the long-term right now).
  • Make a checklist, to-do list, or schedule that will help you hold yourself accountable for your treatment.
  • Know that not everything will be smooth sailing, but adherence will make the illness so much easier to manage.

There are unrealistic optimists and unrealistic pessimists in this world. The vast majority of us are unrealistic optimists and we tend to have unrealistic ideas about our hemophilia diagnosis and what treatment is really necessary.

Additionally, humans tend to be illogical, but we assume we are both logical and rational. For instance, we know exercise is good for us, we’re physically able to exercise, and we’re motivated to exercise, but even when we have the opportunity to exercise we often don’t take it.

Even if we know that our treatment is important and will benefit us in the long run, it can sometimes be difficult to adhere to the plan. If you struggle to hold yourself accountable, consider joining a support group where you can encourage each other to participate in the treatment you each need.
Yes, hemophilia can be inconvenient. But with some diligence, you can lead a very fulfilling life.

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