Since hemophilia was discovered, it has been accepted as a male disease. No one questions that a man is struggling with hemophilia. A man with a bleeding disorder living in a developed country is rarely denied access to healthcare. When he receives a diagnosis, he is told that he has a severe, moderate, or mild form of the disease.
Women face additional challenges, and years of struggling with bleeding issues before they get the explanation they need. A woman with hemophilia may be labeled as a “carrier,” “symptomatic carrier,” “asymptomatic carrier (incorrectly),” “mild hemophilia,” “moderate hemophilia,” or “severe hemophilia.” The assigned label can be dismissive, confusing, or empowering and is often dependent on the individual provider rather than the application of standards for diagnosis and care. While some organizations are working to develop universal guidelines for women with hemophilia, no standard exists that is consistently accepted and applied in daily practice.
A boys club
Sometimes it feels as if women with hemophilia who seek recognition and treatment are trying to break into a “good old boys” club. First, let me emphasize that we do not want to be “good old boys,” and none of us chose to be eligible for “membership” — but we are. And because we are eligible, we need to be acknowledged as “members” and treated as such.
For reasons that I don’t fully understand, some people are bothered by the idea that the plight of women with hemophilia is legitimate. Some seem to believe that the assertion that women struggle with bleeding symptoms somehow minimizes the male hemophilia experience. Yet dismissing women with signs and symptoms of hemophilia diminishes their experiences and blocks their access to necessary care and treatment.
Differences in disease manifestation
Many men have more severe forms of the disease, while women often present with milder forms. However, some women have severe hemophilia, and many men have mild hemophilia. Additionally, bleeding genotype and bleeding phenotype do not always align. Sometimes an individual with mild hemophilia will struggle with more bleeding issues than a person with severe hemophilia. Many doctors now recognize that bleeding phenotype needs to be understood and treated. Ensuring access to appropriate treatment for men and women with mild hemophilia does not minimize the struggles faced by those with more severe forms.
Unity in community
Everyone with hemophilia should be treated equally. We need to band together and acknowledge both male and female patients. Together, we can advocate for the best possible care for everyone with hemophilia, no matter their label or diagnostic status. It is time for both the medical and patient communities to disband the boys club and fully and equally acknowledge both men and women with hemophilia.
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.