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Bleeding disorders in girls and women: setting the scene

Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

Member of the Steering Committee and Chair of the of the Women and Bleeding Disorders Committee, European Haemophilia ConsortiumCopenhagen, Denmark
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Skouw-Rasmussen, Naja
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Michelle Lavin

Michelle Lavin

Irish Centre for Vascular Biology, Royal College of Surgeons in IrelandDublin, Ireland
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Lavin, Michelle
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Minette van der Ven

Minette van der Ven

Finance, European Haemophilia ConsortiumUtrecht, The Netherlands
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Ven, Minette van der
  
21 oct. 2019
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Catégorie d'article: Women With Bleeding Disorders
Publié en ligne: 21 oct. 2019
Pages: 3 - 9
DOI: https://doi.org/10.17225/jhp00138
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© 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

Proportions of women receiving treatment for their bleeding disorder [1]
Proportions of women receiving treatment for their bleeding disorder [1]

Figure 2

Menorrhagia bleeding scores in women with low von Willebrand factor [4]The bar charts compare the ISTH-BAT and Condensed MCMDM-1 VWD menorrhagia-domain scores among women in the Low von Willebrand in Ireland Cohort (LoVIC) study, based on identical clinical information[4]
Menorrhagia bleeding scores in women with low von Willebrand factor [4]The bar charts compare the ISTH-BAT and Condensed MCMDM-1 VWD menorrhagia-domain scores among women in the Low von Willebrand in Ireland Cohort (LoVIC) study, based on identical clinical information[4]
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VWD type among survey respondents (N=198) [1]

VWDPERCENTAGE
Type 140%
Type 240%
Type 319%
Type 1/21%

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

PLATELET DISORDERPERCENTAGE
Immune thrombocytopenic purpura (ITP)40%
Glanzmann thrombasthenia8%
Storage pool deficiency6%
Thrombocytopathy3%
Bernard-Soulier syndrome2%
Unknown41%

Types of bleeding disorders among survey respondents [1]

BLEEDING DISORDERNUMBERPERCENTAGE
Von Willebrand disease19827.93%
Carrier <40%

74% Haemophilia A; 26% Haemophilia B

19327.22%
Carrier >40%

74% Haemophilia A; 26% Haemophilia B

16923.84%
Platelet disorders638.89%
Other factor deficiencies375.22%
Combined deficiencies314.37%
Unknown182.54%

Personal statements about the impact of menstruation

•“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”
Langue:
Anglais
Périodicité:
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Sujets de la revue:
Médecine, Sciences médicales de base, Sciences médicales de base, autres, Médecine clinique, Médecine clinique, autres, Pharmacie, Pharmacologie
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