Hemophilia B Endorsed

Information for Women with Hemophilia B

B2B Book: Hemophilia B: Her Voice, Her Life

As awareness regarding manifestations of hemophilia in women is increasing, it is becoming clear that education on this diagnosis is needed in the hemophilia community. Education can be an important component in encouraging women to seek a diagnosis if symptoms and family history are present in their lives.

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. Women with hemophilia B face unique physical challenges in puberty and childbirth, as well as the symptoms that males experience like bleeds, pain, and damage to tissues and joints.

Addressing these challenges may help to shine more light on a segment of the community that has been underserved in the past. A feeling of loss of control can be common with a chronic condition; by empowering women with hemophilia to be active participants in their care, the sense of control of their situation may increase.

  • “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