Hemophilia Carriers Report Heavy Periods, Little Empathy From Doctors
The vast majority of women who have a bleeding disorder or are hemophilia carriers experience noticeable symptoms, such as bruising or heavy periods, a study based on survey results reported.
These women also often mentioned encountering healthcare professionals who were dismissive or lacking in empathy.
“Many of the experiences described by women with bleeding disorders 20 years ago remain prevalent,” its researchers wrote. “Healthcare provision needs to change to offer them better treatment and support.”
The study, “The views of women with bleeding disorders: Results from the Cinderella study,” was published in the journal Haemophilia.
Hemophilia is caused by genetic mutations that affect the blood’s ability to clot. Most hemophilia-causing mutations are in genes located on the X chromosome that determines biological sex. As such, hemophilia is much more common in males who have only one X chromosome, than in females who have two and can be carriers of the condition.
Little is known about the experiences of women with bleeding disorder or are carriers for hemophilia. Here, a quintet of scientists in the U.K. conducted a survey and a series of interviews and focus groups to learn more.
The study began with internet-based survey of women in the bleeding disorders community. It was answered by 126 women who were hemophilia carriers, 96 women with a diagnosed bleeding disorder, and 58 women with immune thrombocytopenia, a disorder marked by low levels of platelets that often causes excessive bleeding.
Among survey respondents, over 90% were white, and most were employed and well educated.
More than four out of every five of the survey’s 280 respondents reported experiencing heavy menstruation (83%) and/or bruising (81%). Unusually long periods, prolonged bleeding from small cuts, and bleeding at the gums or after dental work were other commonly reported symptoms.
Researchers then conducted focus group discussions with 11 participants, as well as personal interviews with two women. The team highlighted several noteworthy themes from these discussions.
Many of the women reported negative experiences with healthcare providers when they had sought help for their condition. For instance, hemophilia carriers who reported heavy bleeding during menstruation were told it was “just your period” or “just one of those things.”
Societal taboos around menstruation likely contribute to difficulties with these discussions, and can make women experiencing these symptoms feel isolated or unsure whether their experiences are normal or not, the researchers wrote.
“‘You’ve got nothing to compare it to, because you can’t even Google how much a woman is supposed to bleed,” said one hemophilia carrier. “That’s why none of us has done anything about it, because we all think it’s normal because it’s normal to us.”
Researchers noted that their survey did not define “heavy periods,” instead relying on women surveyed to report their subjective experiences. Therefore, it is possible that respondents “may have under-represented their bleeding, particularly those from families with inherited conditions where many women experience significant bleeding without recognition that it is abnormal.”
Other symptoms were attributed to “growing pains” or “infections,” or dismissed as “nothing to worry about” by healthcare professionals. These providers also dismissed concerns based on person’s sex and their own convictions that hemophilia only occurs in males.
“Lack of awareness about diagnosing bleeding disorders in women causes delays in referral and diagnosis and contributes to the negative psychological and social impact of living with these disorders,” the researchers wrote, noting that studies reporting these issues were being published as far back as the late 1990s.
“It is disappointing to find that these problems are still prevalent today,” the team wrote. “There is a need to raise awareness about bleeding disorders amongst all [healthcare professionals] and to empower affected women through education and advocacy.”
A few women noted positive interactions with healthcare providers; one said hers went “above and beyond to help me and my family.”
Women generally stressed the importance of clinicians taking the time to have personal discussions with their patients and being empathetic about their emotions and experiences.