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Caregiver

Hemophilia B Endorsed

Information for Hemophilia B Caregivers

B2B Book: Hemophilia B in Early Childhood

Caring for a child with hemophilia B can be challenging for any parent/caregiver. As young children grow and become curious about the world around them, an obvious tension arises between allowing them to explore and the risk of bruising and bleeding.

Parents/caregivers may find it tricky to manage their child’s needs, along with those of siblings and other family members. Parents/caregivers need to be aware of how hemophilia B may affect them and other family members emotionally and how they can deal with it while parenting/caregiving. With help, parents/caregivers can learn how to care for and cope with their child’s hemophilia B while considering their own needs and the needs of other family members.

PATIENT STORIES

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

Featured Book

Hemophilia B In Early Childhood
Raising a child is challenging, but raising a child with hemophilia B can be uniquely challenging. Download this book to help you prepare for what to expect.
  • “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