Hemophilia Affects Everyone – What Are Some Truths About the Care Partner Journey?

Hemophilia truth time: hemophilia is a shared experience—affecting family, friends, and loved ones. 

In a global survey of more than 2700 participants, including people living with hemophilia (PwH), care partners, and doctors, 93% of PwH reported having a care partner—most commonly, their spouse or partner. For many PwH, the burden goes beyond the bleed, and they know that those emotional, physical, and logistical challenges can impact their loved ones, too. 

So today, we’re showing a little extra love for care partners by shining a light on their experiences.

We brought 8 individuals together to share their hemophilia truths and to better understand the daily impact of hemophilia management on all aspects of their lives. One of them was Suzanne, the mother of 17-year-old, Max.

Even though Max has lived with hemophilia since birth, Suzanne still feels vulnerable at times and wonders how she can help him when she has a fear of needles. Daily demands of hemophilia management can make care partners like Suzanne feel out of control. In her words, “You don’t know what end is up. You don’t know what you’re doing right. You don’t know what you’re doing wrong.”

Max is graduating high school soon and shared in a letter to his mom that “…as I move forward in my path to college, you won’t be able to be there for me all the time to help me, and sometimes the thought of that scares me.” 

Despite the anxiety this life change can bring, Suzanne has trust in the future saying, “The truth is, there is a really great community. There’s really great progress within the disease. There’s hope—it really is going to be okay.”

That’s why it’s important for PwH to share the unseen impacts of their hemophilia truth with their care partners, whether they are physical (eg, concerns about bleed protection or pain), emotional (eg, impact on education, like Max), or logistical (eg, access to treatment centers). When care partners and PwH understand each other, it can help everyone feel less alone.

We also spoke with Julian, a PwH, who teared up as he read a letter from his father, his care partner, about all they experienced together. His father said, “Julian, you started as my son, and as I pen this letter, I think about all we’ve been through, and it reinforces what an amazing person you’ve become. The doctor was right—you would never be like other kids—you turned out more amazing and special than I ever expected.”

In addition to PwH sharing their hemophilia truths with care partners, it is also important to share with their healthcare partners. Openly discussing your whole hemophilia experience with your healthcare team can help you improve your hemophilia management and consider the best treatment options for you to meet your individual goals.

Every hemophilia truth matters. Together, PwH and their care partners have the power to change the conversation. 

Learn more and hear the stories of other PwH at MyHemophiliaTruth.com

Each patient story reflects the real-life experiences of individuals diagnosed with hemophilia. Individual experiences may vary. This patient and caregiver were compensated for their time creating this content.

Source: National Bleeding Disorders Foundation, HemAware, July 2024, Sanofi, 2024