<abstract xmlns="http://www.w3.org/1999/xhtml"><p>The prevalence and impact of bleeding disorders in women is not sufficiently acknowledged, with the organisation of care traditionally biased towards boys and men with haemophilia. In 2017, the European Haemophilia Consortium surveyed women with bleeding disorders, national member organisations (NMOs) and treatment centres to assess the impact of bleeding disorders in women in four domains: physical activity, active life, romantic and social life, and reproductive life. Most women had von Willebrand disease (VWD) or described themselves as a carrier. All reported a negative impact on physical activity, active life and romantic and social life. Up to 70% of women in all groups reported that their bleeding disorder had a significant impact on their ability or willingness to have children, or prevented it. Heavy menstrual bleeding was reported as the having the most significant impact on daily life. Women face barriers to diagnosis and care, including difficulty obtaining a referral and lack of knowledge among general practitioners and gynaecologists. While bleeding disorders share many symptoms, including bleeding after minor injury and trauma, the link between heavy menstrual bleeding and a bleeding disorder often goes unrecognised and its severity is underestimated. Screening is not offered to all eligible women despite the availability of long-established management guidelines; clinical tools to estimate severity may be unreliable. Failure to recognise a bleeding disorder in a woman is a multifactorial problem that is partly due to cultural reluctance to discuss menstruation. Public awareness campaigns are seeking to correct this, and many NMOs involve women in their initiatives and provide women-centred activities. However, a transformation in diagnosis is needed to shift the focus of treatment centres beyond boys and men with haemophilia, and to acknowledge the prevalence and severity of bleeding disorders in women.</p></abstract>

The prevalence and impact of bleeding disorders in women is not sufficiently acknowledged, with the organisation of care traditionally biased towards boys and men with haemophilia. In 2017, the European Haemophilia Consortium surveyed women with bleeding disorders, national member organisations (NMOs) and treatment centres to assess the impact of bleeding disorders in women in four domains: physical activity, active life, romantic and social life, and reproductive life. Most women had von Willebrand disease (VWD) or described themselves as a carrier. All reported a negative impact on physical activity, active life and romantic and social life. Up to 70% of women in all groups reported that their bleeding disorder had a significant impact on their ability or willingness to have children, or prevented it. Heavy menstrual bleeding was reported as the having the most significant impact on daily life. Women face barriers to diagnosis and care, including difficulty obtaining a referral and lack of knowledge among general practitioners and gynaecologists. While bleeding disorders share many symptoms, including bleeding after minor injury and trauma, the link between heavy menstrual bleeding and a bleeding disorder often goes unrecognised and its severity is underestimated. Screening is not offered to all eligible women despite the availability of long-established management guidelines; clinical tools to estimate severity may be unreliable. Failure to recognise a bleeding disorder in a woman is a multifactorial problem that is partly due to cultural reluctance to discuss menstruation. Public awareness campaigns are seeking to correct this, and many NMOs involve women in their initiatives and provide women-centred activities. However, a transformation in diagnosis is needed to shift the focus of treatment centres beyond boys and men with haemophilia, and to acknowledge the prevalence and severity of bleeding disorders in women.

Bleeding disorders in girls and women: setting the scene

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

{"article-title":"Bleeding disorders in girls and women: setting the scene"}

The prevalence and impact of bleeding disorders in women is not sufficiently acknowledged, with the organisation of care traditionally biased towards boys and...

VWD	PERCENTAGE
Type 1	40%
Type 2	40%
Type 3	19%
Type 1/2	1%

PLATELET DISORDER	PERCENTAGE
Immune thrombocytopenic purpura (ITP)	40%
Glanzmann thrombasthenia	8%
Storage pool deficiency	6%
Thrombocytopathy	3%
Bernard-Soulier syndrome	2%
Unknown	41%

BLEEDING DISORDER	NUMBER	PERCENTAGE
Von Willebrand disease	198	27.93%
Carrier <40% 74% Haemophilia A; 26% Haemophilia B	193	27.22%
Carrier >40% 74% Haemophilia A; 26% Haemophilia B	169	23.84%
Platelet disorders	63	8.89%
Other factor deficiencies	37	5.22%
Combined deficiencies	31	4.37%
Unknown	18	2.54%

•	“Needed blood transfusion of two units - as a result missed out on a new career”
•	“Have to plan bathroom times between appointments. Up to 40 changes a day”
•	Had “a bandage and tampon at the same time” and “had a change of clothes at work”
•	Severe bleeding for “over ten years resulting hysterectomy at 38”
•	“I would regularly change sanitary protection and 20 minutes later have blood flowing down my legs“
•	“I would have to stay in bed for three to four days a month because I was so exhausted”

Bleeding disorders in girls and women: setting the scene

Article Category: Women With Bleeding Disorders

Publicado en línea: 21 oct 2019

Páginas: 3 - 9

DOI: https://doi.org/10.17225/jhp00138

Palabras clave
Women with bleeding disorders, von Willebrand disease, diagnosis, menstrual bleeding, haemophilia

© 2019 Naja Skouw-Rasmussen, Michelle Lavin, Minette van der Ven, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Figure 1

Figure 2

VWD type among survey respondents (N=198) [1]

Platelet disorders among survey respondents (N=63) [1]

Types of bleeding disorders among survey respondents [1]

Personal statements about the impact of menstruation

Bleeding disorders in girls and women: setting the scene

Article Category: Women With Bleeding Disorders

Publicado en línea: 21 oct 2019

Páginas: 3 - 9

DOI: https://doi.org/10.17225/jhp00138

Palabras claveWomen with bleeding disorders, von Willebrand disease, diagnosis, menstrual bleeding, haemophilia

© 2019 Naja Skouw-Rasmussen, Michelle Lavin, Minette van der Ven, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Figure 1

Figure 2

VWD type among survey respondents (N=198) [1]

Platelet disorders among survey respondents (N=63) [1]

Types of bleeding disorders among survey respondents [1]

Personal statements about the impact of menstruation

Palabras clave
Women with bleeding disorders, von Willebrand disease, diagnosis, menstrual bleeding, haemophilia