Raising voices to spotlight women with hemophilia, finally

When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia.

The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with hemophilia exhibited extreme or unexplained bruising or excessive bleeding during menstrual cycles or surgeries, she might be labeled a symptomatic carrier. But in my experience, they weren’t diagnosed with hemophilia. It was as if the bleeding disorder world refused to acknowledge that women could also have hemophilia.

I’m fortunate to be an asymptomatic carrier, without abnormal bleeding issues. Over the years, though, I’ve heard heartbreaking stories of bleeding that affected women’s quality of life. From menstrual bleeding that lasts for a month to unnecessary hysterectomies after the birth of a child, women with bleeding disorders were too often overlooked and their suffering ignored.

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“Dismissed,” a documentary written and directed by Bella Hunter for Believe Limited, shines a light on the challenges faced by women with hemophilia. It showcases the courage of five remarkable women whose journeys reveal how the denial or delay of a diagnosis can be life-changing. Thanks to many advocates and this film, the silence of suffering women trying to get a proper diagnosis has been broken.

The film is profound and moving, giving women with hemophilia a platform to be heard and no longer ignored. These stories are no longer whispered behind closed doors in support groups or buried in medical journals. “Dismissed” exposes the pain and suffering of women in the bleeding disorders community, which are now out in the open for the world to see and understand.

My eyes are open

As a mother of sons with hemophilia who doesn’t have bleeding issues of my own, I hadn’t considered the plight of my sisters in the community. My energy was spent on the immediate needs of my sons and understanding how their hemophilia affected them. Looking back, I see my limited perspective. I acknowledge my lack of awareness, and I’m committed to changing for the better.

Now that my sons are grown, I see hemophilia through a different lens.

Women with hemophilia have been fighting for decades to be seen and heard. Even now they may demand treatment, only to be turned away by dismissive providers. If they raise their voices for change, doctors may tell them that “only men can have hemophilia.”

Their pain is real. Their voices are valid. Their stories matter.

“Dismissed” not only raises awareness, but it also challenges the medical community to let go of its damaging assumptions. This film serves as a powerful educational tool and a catalyst for change. It reminds us that the bleeding disorders community must embrace everyone to be whole, and it encourages us to work toward this goal.

I have always believed that people’s three most important cravings are to be seen, heard, and loved. Dawn, Erica, Isabelle, Kate, and Kimberly, I see you and your struggles. I hear the pain in your voices. And I love you as sisters in this rare, amazing, powerful, flawed, and loving community. Thank you.

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.