Other Bleeding Disorders – FAIR Time for Women Coalition https://www.ftfw.org Females Are Important to be Recognized Wed, 07 Feb 2024 20:36:47 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.3 https://www.ftfw.org/wp-content/uploads/2023/05/cropped-FTFW_Logo_2023-symbol-32x32.png Other Bleeding Disorders – FAIR Time for Women Coalition https://www.ftfw.org 32 32 WGPPM White Paper Website https://www.ftfw.org/wgppm-white-paper-website/ Wed, 07 Feb 2024 20:36:47 +0000 https://www.ftfw.org/?p=4703 Click her to view the website

In May 2023, in Atlanta, GA, a group of stakeholders gathered to discuss and provide solutions for women, girls, and people who had or have the potential to menstruate with bleeding disorders.

]]> Assessing Reasons for Treatment and Treatment Type in Females with Bleeding Disorders https://www.ftfw.org/assessing-reasons-for-treatment-and-treatment-type-in-females-with-bleeding-disorders/ Wed, 07 Feb 2024 20:27:35 +0000 https://www.ftfw.org/?p=4700 Click here to read

Presented at ASH in San Diego 2023. Dr. Danielle Nance of FTFW was an author. It argues for prophylaxis for women with ABRs of 2 or more.

]]> Health issues in women and girls affected by haemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues https://www.ftfw.org/health-issues-in-women-and-girls-affected-by-haemophilia-with-a-focus-on-nomenclature-heavy-menstrual-bleeding-and-musculoskeletal-issues/ Wed, 07 Feb 2024 20:08:51 +0000 https://www.ftfw.org/?p=4696 Click here to read

Women and girls affected by haemophilia (WGH) are at an increased risk of bleeding. Furthermore, lack of recognition and misidentification is an ongoing issue.

]]> 2023 Advancements to Serve Female Bleeders Report https://www.ftfw.org/2023-advancements-to-serve-female-bleeders-report/ Wed, 31 Jan 2024 18:26:19 +0000 https://www.ftfw.org/?p=4587 Click here to view our 2023 Advancement to Serve Female Bleeders Report

 

]]> NBDF Women and Bleeding Disorders Website https://www.ftfw.org/nbdf-women-and-bleeding-disorders-website/ Tue, 05 Dec 2023 14:41:44 +0000 https://www.ftfw.org/?p=4393 Read More Here

This is the National Bleeding Disorder Foundation’s website dedicated to educating women on bleeding disorders. There are a variety of videos, documents, and other information on how to care for women with bleeding disorders.

]]> Report on the Annual Global Survey 2022 https://www.ftfw.org/report-on-the-annual-global-survey-2022/ Tue, 05 Dec 2023 14:31:42 +0000 https://www.ftfw.org/?p=4390 Read More Here

Annual report with excellent worldwide data. Page 45 contains interesting and compelling data on bleeding among women.

]]> Bleeding in carriers of hemophilia https://www.ftfw.org/bleeding-in-carriers-of-hemophilia/ Tue, 05 Dec 2023 14:21:19 +0000 https://www.ftfw.org/?p=4387 Read More Here

From abstract: In 2004, 766 questionnaires were sent, and 546 women responded (80%). Of these, 274 were carriers of hemophilia A or B. The median clotting factor level of carriers was 0.60 IU/mL (range, 0.05-2.19 IU/mL) compared with 1.02 IU/mL (range, 0.45-3.28 IU/mL) in noncarriers. Clotting factor levels from 0.60 to 0.05 IU/mL were increasingly associated with prolonged bleeding from small wounds and prolonged bleeding after tooth extraction, tonsillectomy, and operations. Carriers of hemophilia bleed more than other women, especially after medical interventions. Our findings suggest that not only clotting factor levels at the extreme of the distribution, resembling mild hemophilia, but also mildly reduced clotting factor levels between 0.41 and 0.60 IU/mL are associated with bleeding. (Blood. 2006;108:52-56)

]]> Bleeding Disorders in Women and Girls: State of the Science and CDC Collaborative Programs https://www.ftfw.org/bleeding-disorders-in-women-and-girls-state-of-the-science-and-cdc-collaborative-programs/ Fri, 12 May 2023 16:32:56 +0000 https://r6a.a8b.myftpupload.com/?p=3299

READ MORE HERE

Abstract

Women and girls with bleeding disorders experience abnormal and excessive bleeding that can negatively impact their overall health and quality of life. In this report, we provide an overview of the biology, types, clinical care, and state of the science related to bleeding disorders in girls and women and describe Centers for Disease Control and Prevention (CDC) activities related to (1) surveillance of bleeding disorders in women; (2) scientific review, research, and collaboration to inform health care gaps in identifying and caring for women with bleeding disorders; and (3) development of health promotion and education programs to bring awareness about bleeding disorders to both women and girls in the population at large and various health care providers who care for women. Findings generated from surveillance and research activities inform the development of new public health programs aimed at improving diagnostic and health care services and empowering women with bleeding disorders with the knowledge they need to navigate a complex health care system with the need for specialty care services. Additional work is needed to improve provider awareness and understanding of the unique needs of women and girls with bleeding disorders to achieve appropriate care and treatment and ensure optimal outcomes and quality of life.

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