Explore the whole truth of people living with hemophilia (PwH) and change the conversation
PwH know how much work goes into managing the physical effects of their condition, but are there unseen impacts that PwH may not share broadly?
We were curious about how PwH really felt, so we brought 8 individuals together to share their hemophilia truths, and this is what we learned.
The many moving stories we heard brought a simple truth to light; hemophilia management can have a daily impact on mental health, family life, and the ability to explore other aspects of their identity. Kyle, one of the individuals we spoke to, shared the following about his experience growing up with hemophilia: “I was told, ‘No playing sports; you should be bubble wrapped.’” Have you ever felt limited by hemophilia, like Kyle? If so, you’re not alone.
Let's discover some truths: what kind of unseen impacts are other PwH facing?
For many people living with hemophilia, the burden goes beyond the bleed. They may experience emotional, physical, and logistical challenges before, during, and even after bleeding episodes.
Emotional challenges
Many PwH have demanding treatment schedules that may disrupt their daily lives. Missing school, work, social and recreational opportunities, and more can have a negative impact on their mental health and lead to feelings of social isolation.
PwH may also experience negative impacts on their self-perception, social lives, and relationships.
Physical challenges
PwH live with daily concerns about their levels of bleed protection and are often aware of their vulnerability to breakthrough bleeds.
PwH may also periodically experience varying degrees of pain due to bleeding events and accumulated joint damage.
Logistical challenges
Management of hemophilia can come with logistical demands such as refrigeration requirements, the need for reconstitution, difficulties with scheduling treatment, and traveling to their treatment centers. These types of logistical considerations can make daily life more difficult for PwH.
Have you been sharing your whole truth with your healthcare provider (HCP)?
Speaking your whole truth can help you and your HCP:
- Better understand the daily unseen impact of hemophilia
- Improve your hemophilia management and help you meet your individual goals
- Educate PwH and caregivers about hemophilia and its various treatment approaches
Are there any of these challenges that resonate with you that you might not have shared openly? It’s time to consider your whole experience with hemophilia and change the conversation.
Are you ready to change the conversation?
Discover more truths and how you can address your whole experience at MyHemophiliaTruth.com
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