The following information applies to patients with congenital hemophilia A or B with or without inhibitors. Click here for congenital factor VII deficiency or acquired hemophilia.

HERO

HERO (Hemophilia Experiences, Results, and Opportunities) is an international, multidisciplinary research project conducted to help build a solid understanding of life with hemophilia as experienced by people with hemophilia, parents of children with hemophilia, and their healthcare providers.

The quantitative study took place in 10 countries worldwide, and 1236 people completed the survey. From the United States, 189 adults with hemophilia and 190 parents of children with hemophilia responded. Take a look through the key findings from the study and see how they align with your feelings about hemophilia as part of your life.

Hemophilia's effect on families and relationships

Patients and parents build strong relationships, families, and support systems. HERO participants shared their feelings about how hemophilia has influenced their family dynamics and satisfaction with support. Expand this section to see the results.

Key findings from research:

People with hemophilia are leading satisfied and productive lives both at home and at work.

  • The majority of adults with hemophilia (72%) and parents of children with hemophilia (72%) are working full- or part-time
  • Nearly all adults with hemophilia (97%) said they were "very/quite satisfied" with the support from their partners
  • Most parents said they were "very/quite satisfied" with the support from their partners (90%) and families (79%)

The first-ever data on sexual intimacy in adults with hemophilia revealed interesting information.

  • 78% of adults with hemophilia were "extremely/moderately satisfied" with sexual intimacy with their long-term partners
  • Adults with hemophilia reported that hemophilia affected their sex life
    • 60% reported limitations in movement
    • 40% reported constant pain
    • 32% had previously had a bleed during sex

Family bonds show strength despite a hemophilia diagnosis.

  • 81% of parents said that having a child with hemophilia affected another sibling, either positively or negatively
  • A significant number (61%) of parents who also had unaffected children said that having a child with hemophilia actually had some positive impact. Reasons given for a positive impact were:
    • 65% closer family ties
    • 46% increased maturity in other siblings
    • 48% increased responsibility in other siblings
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Hemophilia impacts patients and families every day

Families and patients continue to feel the impact of hemophilia on a daily basis. From school, sports, or communication, participants shared some of their thoughts on how hemophilia affects their everyday lives. Expand this section to see the results.

Key findings from research:

  • 92% of adults with hemophilia reported at least some pain: 53% had constant pain that interfered with their daily lives in the past 4 weeks
  • Children with hemophilia aspire to engage in typical (but high-risk) activities, including football (51%), ice hockey (21%), and martial arts (19%), although swimming is the most common activity (46%)
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Making the connections

Whether it is nurturing connections within their families or their hemophilia treatment centers (HTCs), patients and parents revealed positive feedback on the relationship in their lives. Expand this section to see the results.

Key findings from research:

Patients and parents are more knowledgeable and connected than ever.

  • Most adults with hemophilia (88%) and parents (97%) felt "very/somewhat knowledgeable" about hemophilia
  • 67% of adults with hemophilia and 77% of parents belonged to a patient association

Hematologists, nurses, and hemophilia associations are the most common and most reliable information sources.

  • 86% of adults with hemophilia and 95% of parents were "very/quite satisfied" with their hematologist
  • 87% of adults with hemophilia and 91% of parents were "very/quite satisfied" with their nurse
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The future is bright

Most important, parents and patients believe that the future is bright. On a 7-point scale, with optimistic being a 7, adults with hemophilia reported an average score of 5.32 and those with inhibitors reported an average of 4.73. So while people living with hemophilia can be impacted by a variety of psychosocial issues, the HERO research shows that, overall, people are living successful, satisfying, and meaningful lives.Read more about what HERO has achieved.