How we can raise awareness of hemophilia in women

Columnist Jennifer Lynne shares her ideas for a multipronged approach

by Jennifer Lynne | March 24, 2023

As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the condition is much more prevalent in men and boys.

Raising awareness is essential to ensuring that women with hemophilia receive an appropriate and timely diagnosis, proper treatment, and support. Although Bleeding Disorders Awareness Month, observed every March in the U.S., is coming to a close, it’s vital that we continue our education, advocacy, and outreach efforts year-round.

Following are several ways we can continue to improve awareness of how bleeding disorders affect women.

Education

Educating the public, including healthcare providers, about hemophilia in women is critical to ensuring they receive quality care. This outreach can be done through public awareness campaigns, social media, and educational materials highlighting symptoms, diagnosis, and treatment.

Medical schools and health education programs should provide more comprehensive training on the diagnosis and management of hemophilia in women. Hemophilia advocacy groups and healthcare organizations should develop tools and webinars targeted toward current and future healthcare providers.

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Advocacy

Advocacy efforts can help people better understand the needs of women with hemophilia and drive systemic change. These efforts can involve advocating for increased funding for hemophilia research and support programs, as well as working with policymakers to ensure that these efforts prioritize women’s needs.

Research

Many clinical trials and research studies exclude women and those with mild hemophilia. But more research involving women is needed to improve our understanding of how bleeding disorders affect them. This information can help healthcare providers recognize the condition earlier and provide more targeted treatment.

Screening

Screening is important for early detection and proactive treatment. Women who regularly experience heavy menstrual bleeding, iron deficiency or anemia, or frequent nosebleeds should be tested for bleeding disorders. Physicians should ask about any family history of hemophilia or unexplained bleeding.

Collaborative care

A multidisciplinary approach to care involving hematologists, gynecologists, and other specialists can help ensure that women with hemophilia receive comprehensive care that addresses all of their specific needs.

Support networks and outreach

Support networks, such as patient groups and online communities, can provide women who have hemophilia and their families with emotional support and practical advice. These networks can also serve as a platform for raising awareness and advocating for improved care.

Outreach should include underrepresented minority communities and those who don’t have access to proper care due to financial, language, or other barriers. Resources available to women with hemophilia should include mental health, aging, and coping strategies.

Empowerment

Women with hemophilia should be empowered to advocate for themselves and educate others about the condition. When possible, women should be provided the resources to self-infuse as a way to increase their independence and help them manage their hemophilia.

By speaking out and sharing our experiences, women with hemophilia can help raise awareness and reduce the stigmas we face. Let’s make every month Bleeding Disorders Awareness Month.

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.

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About the Author

Jennifer Lynne Jennifer Lynne is an entrepreneur specializing in digital marketing, a self-professed computer nerd, and a nationally competitive Scrabble player. Jennifer has strong ties to the bleeding disorder community; she was diagnosed in 1975 with hemophilia B and Von Willebrand’s disease at age 10. She is a University of Wisconsin, Madison graduate with a BA in marketing and journalism, and was in MIT’s Birthing of Giants Fellowship Program. A native of Brookfield, Wisconsin, she now resides in sunny Punta Gorda, Florida. Jennifer hopes her column will raise awareness for hemophilia and other bleeding disorders, especially among women.

Comments

Destinee DiPrima

Great article. As a carrier of severe Hemophilia A and a mother of an adult daughter with severe Hemophilia, and one mild, I appreciate the awareness for women with hemophilia that is finally starting to be taken more seriously and not just brushed to the side.

Jennifer Lynne

Thank you, Destinee! We are making progress, but I am afraid we still have a long way to go. I hope your family has found good medical care.

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