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Patient Stories

Hemophilia B Endorsed

Patient Stories

Read firsthand patient and parent stories from members of the hemophilia B community. Then read their current stories to find out what they are up to now.

Becky
Dan
Jeff
Jennifer
Wayne
Elizabeth
  • “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