How gender bias in healthcare affects women with hemophilia
Why women and girls with bleeding disorders deserve more consideration
Historically, hemophilia has been viewed as a disease that affects men and boys, which has led to significant gender bias against women with the disease in research, diagnosis, and treatment. As a result, there’s a lack of awareness and understanding of how hemophilia affects women and girls, leading to cases of delayed diagnosis, misdiagnosis, and inadequate treatment.
It’s essential that we recognize and address this gender bias with hemophilia and other bleeding disorders to ensure that all patients receive appropriate care and support.
Delays in diagnosis
Von Willebrand disease (VWD) is a bleeding disorder that can affect all people, be they male or female. A frustrated mother whose family history includes VWD wrote on Facebook that her daughter was born at a hospital that wouldn’t test her for the condition because she was a girl. She had a major bleed at 4 months old. Her son, on the other hand, was tested before birth, she said; he was found positive and received treatment.
Women with bleeding disorders typically experience a delay of 16 years from symptom onset to diagnosis, according to Dr. Amber Federizo on a recent Octapharma webinar titled “Women and Bleeding Disorders: Telling Our Story Our Way.” She also pointed out that women with von Willebrand disease continue to have heavy menstrual bleeding two years after diagnosis.
This is unacceptable.
Dr. Federizo’s comments brought me back to the ’80s and my feeling of not being worthy of my hematologist’s time. I’ve frequently been made to feel that men had it worse and that my problems with von Willebrand and hemophilia type B were minor in comparison. There’s a feeling within the bleeding disorder community that women aren’t affected as severely as most men, leading them to feel their experiences are minimized. This thinking ignores the fact that women of menstruating age bleed every month.
Women with bleeding disorders have been subjected to inconsistent wording, further exacerbating the problem. Since age 10, for example, I’ve been labeled a “carrier,” “symptomatic carrier,” “very symptomatic carrier,” “factor IX deficient,” “mild hemophiliac,” or “moderate hemophiliac.” Men and boys generally don’t face this problem.
My symptoms of anemia and heavy menstrual bleeding were often brushed off, even though I’d been diagnosed with multiple bleeding disorders and was frequently anemic. My gynecologist would say my problems were hematology-related, and my hematologist would say the problem was gynecological. It wasn’t until a near-death experience that the two spoke on the phone, and some progress was made.
I turned 30 in 1995, when the medical community still had little to offer women with bleeding disorders. I endured multiple dilation and curettage procedures. I tried birth control pills, which helped for a few years. My hematologist prescribed DDAVP (desmopressin acetate) infusions and Stimate (desmopressin acetate nasal spray), but neither form of the medication helped. I gave up my fertility in my 30s after being told my bleeding would be too excessive to survive a pregnancy.
We must remember that women frequently have life-threatening bleeding, even though they are “mild” or “just a carrier.” Treatment is often more difficult for a mild hemophilia or carrier to obtain because it’s saved for hard-to-control bleeding episodes. Moderate or severe hemophilia is often treated regularly and prophylactically to prevent bleeding.
The first step to correcting this gender bias is to acknowledge it exists. We’ve made progress, but we have a long way to go.
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.
Like yourself, I was diagnosed with Von Willebrands later in life.
I was born in 1952 and I was always known as the "problem" due to my constant sillly bleeding whenever I fell over as well as prolonged nosebleeds etc. My periods were hell with my needing two sanitary towels each time and also lasting for ten days in a month. The GP used to tell me that "It will get better once I had a child" as well as "I could have an operation to cauterise the inside of my nostrils.
When I had my son in 1985 I had severe PPH which almost killed me. I can remember hearing the nurse saying to a Doctor that "I think we have lost her!"
My son also had bleeding problems with and I took hi several times to the GP about it but was shrugged off.
When he started to grow a molar tooth he had a long bleeding episode and I took him to the GP. Again it was shrugged off and told that it was a dental issue. I then took him to see our dentist who, after inspecting the site, called in another dentist to also examine my sons tooth area. They said that "they were no happy with the type of clot that had formed and they wrote a letter to my GP to request a blood test. I was also told that if the bleeding restarted, I should take him tp A&E immediately. Once again I took him and the letter back to the GP to request a blood test was told that "we don't like doing blood tests on children and the amount he was losing was probably no more than a teaspoon"" but they carried out a blood test anyway.
Upon getting home, my son started bleeding once again and even though it was nightime, I took him to A&E. He was admitted and I was asked if they could do a blood test on me as my son was "very weak from loss of blood". The next morning, a Consultant came to the bedside and told me that my son had "Von Willebrands Disease and that he had got it from me!"
We were referred to the Royal Free Hospital "Katherine Dormandy Trust" and were at last taken seriously. When I showed photos that I had taken showing some of his heavy bruising episodes, I was asked for permission to use them as part of the training programme as the bruises were so obviously not normal. They are still being used today.
I find that people sometimes still say "only men get haemophilila" !!
Keep on writing as it really helps to hear other people's stories about this issue.
Ellie, thank you for sharing your important story. It is crucial to continue raising awareness of the disparity in treatment between women and men with bleeding disorders. Your perspective sheds light on the work that needs to be done, and I am grateful for your voice.