Accelerating action for women who bleed

The theme for this year’s International Women’s Day (8 March) is ‘Accelerate Action’. It’s a concept relevant for moving towards equality and equity in women’s lives – including for women with a bleeding disorder.

Unmet need

We know a lot about the struggles women who live with a bleeding disorder face in terms of equity of treatment and care.

Back in 2020, our Cinderella study started to explore the experience of women with a diagnosed bleeding disorder living in the UK. Despite big advances in treatment over the same period of time, we found that many of the experiences described by women with bleeding disorders 20 years ago hadn’t changed.

Lack of diagnosis until giving birth to a child diagnosed with a bleeding disorder was a common story, despite there often being a history of heavy periods. Many women told us they felt unheard, misunderstood and isolated, at least in part due to the myth that only men are affected by bleeding disorders such as haemophilia (even among members of the medical profession). They also told us that accessing the right treatment and care was not always straightforward.

Big impact, less recognition

More recently, we’ve run studies looking at the lived experience of specific bleeding disorders.

Our Glanzmann’s 360 (GT 360) study explored living with Glanzmann thrombasthenia. We found that, although men and women are affected in roughly equal numbers, women are impacted to a greater degree. Women in the study often described starting their periods as traumatic, and several were told they’d would never have children due to the risk of a life-threatening bleed.

We’re now looking into the lived experience of von Willebrand disease in our ongoing VWD 360 study. Again, although men and women are affected in roughly equal numbers, interim results suggest that women are impacted to a greater degree.

Another finding across Haemnet and other studies is that diagnosis is often delayed in women who bleed. The reason for this is that, sadly, when they report heavy menstrual bleeding, it isn’t treated seriously enough. It’s not uncommon for them to be told, “It’s just because you’re a woman.” Of course, the implication of this is that they just have to deal with it.

#AccelerateAction

The website for International Women’s Day calls for “increased momentum and urgency in addressing the systemic barriers and biases that women face, both in personal and professional spheres.” This is certainly applicable to the need for improvements in diagnosis, treatment and care for all women and girls who live with a bleeding disorder. 

We need to end stigma around discussing heavy periods. Women who report heavy bleeding, whether in primary or secondary care, need to be heard. All women with a bleeding disorder need access to timely and effective diagnosis, treatment and care. 

We also need to bust the myth that women aren’t affected by haemophilia – they are. Women are affected by all kinds of bleeding disorders.

The possibility of having a bleeding disorder should never be ruled out “just because you’re a woman”.

Resources 

Animations

• Haemnet. Living with Glanzmann’s Thrombasthenia | GT360 Study
• Haemnet. Struggles and support: A mother’s haemophilia story | Cinderella Study)
• Haemnet. It’s not all about boys: A story of haemophilia | Cinderella Study)
• Haemnet. Bruises, bleeds and babies: A story of Type 3 VWD | Cinderella Study)

Published papers

• Khair K, Fletcher S, Jenner K, Holland M. One day at a time: Life with Glanzmann thrombasthenia – qualitative results from the GT360 study. Haemophilia 2024. doi: 10.1111/hae.15126
• Khair K, Pollard D, Steadman L, Jenner K, Chaplin S. The views of women with bleeding disorders: Results from the Cinderella study. Haemophilia 2022; 28(2): 316-325. doi: 10.1111/hae.14514
• Sanigorska A, Chaplin S, Holland M, Khair K, Pollard D. The lived experience of women with a bleeding disorder: A systematic review. Res Pract Thromb Haemost 2022; 6(1): e12652. doi: 10.1002/rth2.12652
• Chaplin S, Khair K. “You’re only a carrier” – women and the language of haemophilia. J Haem Pract 2021; 8(1): 128-132. doi: 10.2478/jhp-2021–0015