One woman’s complicated journey to a hemophilia C diagnosis

Ina Fowler, 68, of Brooksville, Florida, lives with several conditions, including hemophilia C, platelet dysfunction, atrial fibrillation, and peripheral artery disease. She recently suffered a brain bleed. To learn more about Ina’s journey, I spoke with her via Zoom.

When Ina was in second grade, she hemorrhaged after a tonsillectomy. “They had to go back down and sew me back up,” she told me. “I almost died.” What followed were decades of medical questions, missed answers, and — more than 40 years later — a diagnosis of hemophilia C alongside a platelet disorder.

Like many women with bleeding disorders, Ina’s history includes years of heavy periods, iron-deficiency anemia, and injuries that consistently bled far more than expected. Dental work, biopsies, and angioplasties didn’t just feel risky — they repeatedly triggered life-threatening bleeding. “I bled so heavily they wanted to bring me back for surgery,” she said, remembering an angioplasty eight years ago.

By 2000, Ina had finally received a formal diagnosis of hemophilia C; genetic testing later identified a pathogenic F11 gene variant, which creates a deficiency of factor XI. Hemophilia C is less common than types A and B and is usually milder, but bleeding can still be significant, especially with surgery, dental work, or trauma. It most often follows an autosomal recessive inheritance pattern, affecting men and women equally. But even people with a single abnormal F11 copy can have clinically significant bleeding.

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Treatment complicated by faith

Complicating Ina’s care is a second reality: She’s a Jehovah’s Witness. Her faith restricts the use of whole-blood or plasma transfusions (though she says many derivatives are acceptable), which adds another layer to surgical planning. When doctors recommend treatment, she worries about what will actually be available in the operating room. “I want to know what they have on hand, just in case,” she said.

Ina has navigated multiple life-threatening health crises, inconsistent care, and lost medical records when her house flooded. Practical barriers make things harder: She doesn’t drive, which complicates travel to specialist centers in Tampa that focus on bleeding disorders. She relies on local doctors and does not have the coordinated team-based care offered by federally funded hemophilia treatment centers.

Despite everything, Ina is resilient and determined. She’s treated with Amicar (aminocaproic acid) for procedures, takes iron supplements for anemia, and keeps advocating for herself in a system that can be hard to navigate.

Ina’s story is a stark reminder that bleeding disorders in women are under-recognized and under-researched. Early testing, referral to a hemophilia treatment center, and careful surgical planning (including consideration of religious preferences) can make the difference between harm and safety.

Her advice is simple and urgent: Test early, and don’t assume your heavy bleeding is “just normal.”

“If you notice bleeding like that, doctors should automatically do blood tests to check for hemophilia,” she told me. Ina wants hospitals to consider immediate testing when patients present with a severe hemorrhage, and she wants women to know that genetic testing and modern treatments can change outcomes.

Ina’s message is clear: Don’t be quiet about bleeding. It matters.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.