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Preteen

Hemophilia B Endorsed

Information for Preteens With Hemophilia B

B2B Book: Navigating the Preteen Years

Being a preteen is a complicated stage of life, even without a chronic condition, but having hemophilia B can add unwanted stress. These important developmental years are full of changes that can affect sense of self, family, and friendships, which is why support and understanding are so important as preteens navigate their way through a maze of questions and uncertainty.

Preteens with hemophilia B aren't the only ones who face difficulties. Parents also need to adjust as children start to become independent and take accountability for their lives and their hemophilia B treatment. The good news is that neither parents nor preteens living with hemophilia B are alone. Guidance and support are available from medical professionals, families, and patients with firsthand experience.

PATIENT STORIES

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

Featured Book

Navigating the Preteen Years
This book provides advice and support specifically about hemophilia B druing the preteen years.
  • “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