Counting the Missing Women with Hemophilia

The World Federation of Hemophilia states that any person, male or female, with factor levels below 40 percent has hemophilia. However, conventional medical wisdom has not caught up. Women who have abnormal bleeding should be assessed for hemophilia, particularly when they have a family history. Yet too often, I hear stories of women who have hemophilia in their families but have been told that their severe bleeding and bruising are normal. These women are frequently dismissed without appropriate testing and care.

Grassroots support

Gatherings are taking place across the country to discuss the struggles of women with bleeding disorders. The sad reality is that we may never know the full extent of underrepresentation in diagnoses of women with hemophilia. So many women are turned away when they seek diagnosis and treatment for bleeding episodes and are uncounted in statistical research.

Research matters

Recent research highlights the issues that women with bleeding issues face, acknowledges that women do manifest hemophilia, and encourages appropriate treatment plans. The first step to finding appropriate treatment is assisting women with getting an accurate diagnosis. A recent article reviewing research on female carriers concluded that there is insufficient evidence to draw conclusions about hemophilia carriers and hemorrhagic tendencies. This is an issue. Insufficient research on women with hemophilia prolongs the challenges for those in need of care. With a gap in studies of women with bleeding disorders, many medical professionals lack the knowledge to guide their female patients.

National events

In November 2018, the first National Conference for Women with Hemophilia was hosted by the Hemophilia Foundation of Michigan. A second conference was hosted last month in Detroit, with spaces filling up just one week after applications opened. The event’s popularity indicates that women with hemophilia and symptomatic carriers are reaching out for resources and support.

Specialized treatment

While attending the conference in November, I listened to a speech by a representative from the Foundation for Women and Girls with Blood Disorders. She explained that there are currently 45 Hemophilia Treatment Centers (HTCs) with specialized women’s clinics in the foundation’s database. But many more HTCs don’t have such centers in place. The result is that some women who approach their local HTCs seeking treatment are turned away or have their symptoms minimized by doctors who are stuck in a male-dominant hemophilia paradigm.

Missing women

I believe that it may be years before we fully understand how many women with hemophilia are undiagnosed or “missing.” As more grassroots gatherings happen and more hematologists, primary care physicians, nurses, dentists, and other medical professionals become educated about women and hemophilia, I hope to see a shift in understanding of bleeding disorders. And hopefully, that will lead to more doors opening to accurate diagnoses and treatment.

I hope that in the future women with hemophilia will no longer suffer in silence. I look forward to a time when all women with bleeding disorders have access to appropriate care and treatment. These formerly “missing” women will stand up and be counted, while they take their place within the wider hemophilia community.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.