Hemophilia B: Her Voice, Her Life

Book Details

Historically, hemophilia was believed to affect only males. Because awareness regarding manifestations of hemophilia in women is increasing, there is an opportunity to hear their voices as they share their stories. Hemophilia B: Her Voice, Her Life provides support and encouragement to women with hemophilia B on their paths to empowerment.

  • “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