I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed by top medical professionals working for hemophilia treatment centers (HTCs) was alarming.
I wondered why this is happening.
The dominant paradigm is that only men get hemophilia. Some medical professionals understand that women can get hemophilia and have bleeding issues, but that knowledge is rare. Unfortunately, people believe that hemophilia manifests in women only if both parents carry the mutation.
We now know that hemophilia can manifest in women, even when they have only one affected X chromosome. Doctors who believe outdated information claiming that women cannot get hemophilia create a barrier to proper diagnosis and treatment.
Large vs. small bleeds
When people think of hemophilia, they think of large, painful joint bleeds. They don’t envision the smaller microbleeds reported by women and men with mild hemophilia. Women associate bleeds with minimal swelling, pain, tingling or bubbling sensations, limited range of motion, wounds that never scab over, and slow healing processes.
Sometimes, when women claim they are bleeding, their pleas go unheard. They are dismissed, even when they report swelling, limited range of motion, and pain. Medical professionals believe their brief education on men and hemophilia is more accurate than a woman’s lifetime of experience.
A picture is worth a thousand words
Documentation helps medical professionals understand my situation. I document my bleeds, including what caused them, when they started, and what did and did not help.
I take photographs whenever I can. Joint swelling, unformed scabs, and photos before and after factor treatment can be used as visual examples. Doctors recommend imaging through ultrasound, CT scans, or MRIs to determine if someone is bleeding.
Bleeding is real, and treatment is necessary
Both women and men must be taken seriously when they ask for help.
If a woman seeks care for what she believes is a bleed, HTC staff must determine if she is bleeding. If she is not, they must work together to locate the source of her pain. Instead of dismissing women, doctors have an opportunity to build bridges of communication and jointly explore treatment options. Care partnerships are critical.
I’ve sought help many times only to be told I probably wasn’t bleeding. Unfortunately, I was bleeding quite a few of those times. My doctors may have lacked experience with women with hemophilia or hemophilia patients in general. Either way, they were unfamiliar with my symptoms. Doctors need to educate themselves on the differences in the manifestation of mild and severe hemophilia.
Education and joint partnerships to create treatment plans are critical for improving our understanding of women with hemophilia. We want to ensure that all women with hemophilia have access to appropriate diagnosis and care.
Women know their bodies. They know when something is wrong. When women say they are bleeding, they must be taken seriously. Their lives may depend on it.
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.