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Family

Hemophilia B Endorsed

Information on Caring for A Family Member With Hemophilia B

B2B Book: Hemophilia B: A Family Perspective

Hemophilia B affects more than just the individual who has it—it also affects parents, brothers, sisters, grandparents, and other close relatives. Being prepared as a family can help everyone learn how to manage hemophilia and the emotions that accompany it.

Families of someone with hemophilia B may experience many feelings, including shock, worry, blame, denial, guilt, stress, and anger, to name a few. To help with the emotions and challenges that accompany living with hemophilia B, it’s important to create a strong family bond.

PATIENT STORIES

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Read firsthand, real-life stories from members of the hemophilia B community.

Featured Book

Hemophilia B: A Family Perspective
This book provides real-life examples and guidance for families with a member who has hemophilia B.
  • “I try to foster healthy self-esteem by trying new things with the confidence of a survivor and the wisdom of a mature bleeder. Chronic illness is a blessing when its management is just part of life.”
    Paul B.
    Patient
  • “I think it is so important to make the chronic illness a nondefining part of life. My daughter has hemophilia B, but that certainly isn’t the most important thing I want people to know about her. We’ve worked hard to make sure we keep hemophilia B in a place of balance in our lives.”
    Becky V.
    Caregiver
  • “I strongly encourage other caregivers to get involved. This gives you the tools and strength to better advocate for your care. It also provides that all-important support system.”
    Nina D.
    Caregiver
  • “I go to my hematologist with the direct intent of discussing my treatment plan and product; not empty minded, waiting for instruction.”
    Felix G.
    Patient
  • “Walking is particularly difficult, so I limp in private and swagger in public.”
    Paul B.
    Patient