According to a story from Reuters Events, hemophilia treatment has seen significant advancements in recent years. However, female patients continue to face difficulties that often lead to disparities in quality of care and overall outcomes. A holistic approach that addresses gender discrimination, ensures access to diagnosis and treatment, and acknowledges the need for mental health support will be critical moving forward.
Hemophilia is a genetic disorder which affects the ability of the blood to form clots, a process that is vital for stopping bleeding after a wound is sustained. The severity of symptoms can vary widely. The disorder is caused by a mutation found on the X chromosome. Symptoms include bleeding for a long time after an injury, risk of bleeding in the brain and joints, and easy bruising. Bleeding in the joints can cause permanent damage and brain bleeding can lead to headaches, decreased consciousness, and seizures. There are multiple types of hemophilia, with the most common types being type A and type B, which are distinguished by having deficiencies in different clotting factors. Treatment involves replacing the missing clotting factor. Drugs that thin the blood should be avoided. To learn more about hemophilia, click here.
Overcoming Gender Bias
In addition to the symptoms faced by male patients, female patients also have to contend with additional opportunities for risky bleeds, such as the menstrual cycle, pregnancy, and childbirth. Because hemophilia is the result of a mutation on the X chromosome, the disease has traditionally been associated with men, and physicians assumed that women were merely carriers of the mutation. However, it’s now clear that women can be patients and experience major symptoms. 11% of the people that seek treatment at Hemophilia Treatment Centers are women.
Unfortunately, there’s a lack of awareness about the potential for women to be patients, leading to delayed or lack of diagnosis and treatment. Underdiagnosis is an issue facing these patients around the world. When a male patient is diagnosed, doctors often fail to evaluate female relatives for symptoms. Social determinants of health, such as income level, can exacerbate issues surrounding treatment access as well. Many US treatment centers, for instance, are part of vast research centers or medical campuses, far away from low-income communities.
Only through addressing knowledge gaps and spreading awareness can treatment outcomes improve for women living with hemophilia.