Personal Journey: Jennifer's Story (CDC – May 14, 2024)

Story told Jennifer from CDC.

Jennifer, born in 1965, was diagnosed at age 10 with both hemophilia B and von Willebrand disease (VWD) after a tonsillectomy led to unexpected bleeding. Originally, she and her family didn’t fully grasp the seriousness—until others in her family, including a cousin and grandmother, also experienced bleeding issues.

Despite chronic knee problems and multiple surgeries during childhood, and struggling with extremely heavy menstrual bleeding (sometimes needing a sweatshirt tied around her waist during school), Jennifer persevered. She found solace in swimming, which she continued through college.

As an adult, she learned to self-infuse clotting factor at home, reducing emergency room visits, and started receiving iron infusions to treat anemia. Connected with a Hemophilia Treatment Center two hours away, she now benefits from responsive care via email and supportive professionals.

Jennifer now actively advocates for others—writing for BioNews, participating in online bleeding disorder communities, and striving to raise awareness of VWD in women. She hopes her story prompts earlier diagnoses and better treatment options.