Support for women with a bleeding disorder

/Support for women with a bleeding disorder
Support for women with a bleeding disorder2018-11-23T20:38:13+00:00

supported by 
 
The coderouge program, sponsored by CSL Behring, aims to increase diagnosis and access to care for women and girls with inherited bleeding disorders.

Click here to read about coderouge objectiveskey strategies and expected outcomes.

What is an inherited bleeding disorder?
It is a lifelong condition in which a person’s blood doesn’t clot normally. Blood clotting involves both blood cells called platelets and several proteins called clotting factors. A diagnosis of a bleeding disorder means that either the platelets or clotting factors do not work in the right way or are in short supply. So, people with bleeding disorders bleed longer than normal. Bleeding disorders tend to run in families and can affect both males and females. However, women can suffer more bleeding because of menstruation and childbirth. The majority of women affected by a bleeding disorder are not yet diagnosed. With treatment, women with bleeding disorders can lead full and active lives.

    One in 100 Canadians carries an inherited bleeding disorder gene, yet so many remain undiagnosed. In an effort to educate a younger audience about the symptoms and risks of bleeding disorders, we’ve developed an e-novella – entitled ‘A Negative’ – to spread the word in an engaging and memorable way.

    Playing off the popular Harlequin romance genre, ‘A Negative’ tells the story of a young woman unknowingly living with von Willebrand disease. We’ve published the e-novella on Wattpad – the world’s largest online community of writers and readers – in order to connect with young women across Canada. This unique approach introduces the issue into a different medium, enabling us to speak to and educate an engaged but unsuspecting audience.

    CLICK HERE for the press release.

    CLICK HERE to read ‘A Negative’.

    The CHS along with Hemophilia Ontario had the opportunity to air a short video during Toronto Fashion Week earlier this fall. The video was aimed at raising awareness about women and bleeding disorders and featured the coderouge program. Click here to watch it.

    A Webcast of coderouge 2012: the 1st Canadian Conference on Bleeding Disorders in Women that took place May 25, 2012 in Toronto is available on YouTube. To view the presentations, please click on the links below:

    Welcome remarks, launch of CODErouge program and
    Overview of bleeding disorders in women
        -Dr. Rochelle Winikoff

    Quality of life panel presentation: Canadian women share their stories
    Moderator: Pam Wilton, RN

    Management of bleeding disorders in women – Part 1
    Moderator: Dr. Rochelle Winikoff

    Laboratory investigation and diagnosis of VWD inside and outside HTCs 
        – Dr. Paula James

    Pregnancy, delivery and the postpartum 
        – Dr. Peter Kouides

    Management of bleeding disorders in women – Part 2
    Moderator: Dr. Rochelle Winikoff

    Menorrhagia and other gynaecological complications 
        – Dr. Diane Francoeur

    Iron deficiency anemia 
        – Dr. Sue Robinson

    Management of bleeding disorders in women – Part 3
    Moderator: Dr. Rochelle Winikoff

    Emergency management: case studies 
        – Sherry Purcell, RN and Dr. Michelle Sholzberg

    Multidisciplinary programs for women with bleeding disorders (WBD)
    How to set up a women’s multidisciplinary program

    Models of WBD programs: panel presentation
        – Dr. Rochelle Winikoff

    State of the art research relating to bleeding disorders in women and Closing remarks
    Moderator: Dr. Patricia McCusker

    International research perspectives 
        – Dr. Peter Kouides

    Pregnancy in women with bleeding disorders 
        – Dr. Christine Demers

    Qualitative assessment of the emotional and behavioural responses of hemophilia A carriers 
        – Nisa Renault, Ph.D.

    What’s new in bleeding assessment tools? 
        – Dr. Paula James


    Awareness

    A 4-minute von Willebrand disease segment aired as part of the “Canadian Health & Family” broadcast on CTV on, May 14, 2016.

    You can watch the segment by clicking on the following links:

    Streaming:
    4-minute segment: www.HealthandFamily.ca/VonWillebrand 
    1-minute segment: www.healthandfamily.ca/show/von-willebrand-disease-spreading-awareness-2 

    Downloadable: 
    4-minute segment: https://vimeo.com/user4577516/review/162552873/83d988cf96 
    1-minute segment: https://vimeo.com/user4577516/review/162552869/9b6a10ba5a

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