Our continuing efforts to raise awareness about women and bleeding disorders

For almost 25 years, the CHS has played a key role in raising awareness about bleeding disorders that affect women. In 2012, to ensure the continuity and effectiveness of its work in the field of bleeding disorders in women, the CHS created a program entirely dedicated to it: CODEROUGE | WHEN WOMEN BLEED TOO MUCH.

This program, targeted at health care providers and women, features a variety of outreach and awareness components including educational publications, conferences and workshops, displays at medical conferences, promotional resources and a comprehensive section on the CHS website.

Background

CODEROUGE | WHEN WOMEN BLEED TOO MUCH was launched in Toronto on May 25, 2012 at the 1st Canadian conference on bleeding disorders in women, hosted by the Canadian Hemophilia Society. Since then, two additional national conferences were held, CODEROUGE 2018 in Québec City, and a virtual CODEROUGE in 2021. You can access webcasts of all the sessions from the three conferences on our YouTube channel (www.youtube.com/user/CanadianHemophilia) or at www.hemophilia.ca/videos.

As you probably know, the most common inherited bleeding disorder, affecting up to 1% of the population, male and female, is von Willebrand disease (VWD). However, women with VWD, but also with other bleeding disorders such as rare factor deficiencies and platelet function disorders, tend to have more symptoms than men because of menstruation and childbirth. VWD is all too often undiagnosed or misdiagnosed and the symptoms of heavy or prolonged menstrual periods are ignored. Women with an undiagnosed and untreated bleeding disorder risk serious complications that may even lead to unnecessary hysterectomies. On average, it takes up to 16 years before a woman finally gets a diagnosis. After years of suffering, once diagnosed, effective treatment is available and a woman’s quality of life improves dramatically. It is therefore critical to raise awareness about the issue so that accurate and timely diagnoses are provided to affected women.

So how do we do this? How do we make sure that women with bleeding disorders are recognized and ultimately receive the proper care and treatment?

Health care providers – Medical and Scientific conferences

As previously mentioned, CODEROUGE’s targeted audience is health care providers and women. But just not any kind of health care providers. The program speaks to first-line physicians who might hear about the bleeding issues of their patients before anyone else: family doctors, gynaecologists, obstetricians, emergency physicians and nurses, and even dentists. Our job is to make sure that women are listened to and properly referred for diagnosis testing when needed. This is why the CHS has met with hundreds of health care providers while attending as an exhibitor or presenting posters at more than a dozen medical and scientific conferences organized by different associations such as the Society of Obstetricians and Gynaecologists of Canada (SOGC), Emergency Nurses Association of Ontario, Ordre des hygiénistes dentaires du Québec, National Emergency Nurses’ Affiliation (NENA), Canadian Association of Emergency Physicians (CAEP), Primary care physicians (Pri-Med) and the College of Family Physicians of Canada (Family Medicine Forum [FMF]) which we attended for the third time just recently, from November 8-10, 2023.

These conferences allow us to distribute the Guidelines for the diagnosis and management of von Willebrand disease, and other useful publications, but they also allow us to connect directly with those health care providers who are always very eager to hear what we have to say about the importance of identifying women who might have a bleeding disorder without knowing it. We like to think that these important connections lead to having many women finally receiving a proper diagnosis followed by a proper treatment.

General population

CODEROUGE’s work doesn’t stop there. The CHS and its provincial chapters have also organized a fair share of awareness events over the years aimed at the general population. Different audience, but same goal as with the health care providers: increase the number of women with bleeding disorders who receive a proper diagnosis.

Awareness events among the general population allow us to reach out to women who have no idea that what they’re going through might actually be abnormal or know that it is but have no idea what it is that makes them bleed too much. Explaining the symptoms of bleeding disorders is a starting point, guiding the women to specific resources such as a menstrual assessment chart so that they can go back to their primary care physician with quantified data can be the next step. Taking the Self-Bat test on the Let’s Talk Period website is also a good place to start. In any case, when meeting with women in the general population, we make sure to let them know that they are no longer alone and that there are resources to help and guide them towards a proper diagnosis.

The impact of CODEROUGE

Oddly enough, all this work does not present immediate and clear outcomes. More often than not we will never know the impact of our efforts. How can we know that the woman we talked to, who recognized what she’s going through when reading our material, went ahead and talked successfully to her family doctor to be tested and eventually received a proper diagnosis? How can we know that the medical resident met at the FMF will automatically think of a possible bleeding disorder when talking with his patient who bleeds too much? We don’t and we can’t. But we are genuinely convinced that this work is not futile. CODEROUGE is not futile. Nor are the women who bleed too much. Every woman’s victory in finally receiving a proper diagnosis is a victory for us all.

If you are interested in raising awareness about women and bleeding disorders, please reach out to your CHS provincial chapter or the national office. We will be more than happy to provide you with educational and promotional material such as the community presentation to support you in your efforts. Don’t hesitate to use it!

To know more about women and bleeding disorders and CODEROUGE, please go to www.coderougewomen.ca.

Some of our awareness events

FAMILY MEDICINE FORUM at the Palais des congrès, Montréal, QC  |  November 8-9-10, 2023

Our awareness tools!

Does your patient bleed too much? Let’s talk about it!

Sabrina Pelletier, nurse at the CHU Sainte-Justine bleeding disorder treatment centre, talking to a medical resident from Alberta.

Mina Ebid, CHS National Community Projects Manager with Sabrina Pelletier, nurse at the CHU Sainte-Justine bleeding disorder treatment centre.

HEALTHPARTNERS HEALTH FAIR, Ottawa, ON  |  October 18, 2023

HEALTH FAIR, Victoria, BC  |  September 2019

CHS Board of Directors member, Rick Waines, at a Health Fair in Victoria BC in September 2019.

PRI-MED, Toronto, Ontario  |  May 4-7, 2019

Kathy Lawday, past CHS Board of Directors member, helping out to raise awareness.

SOGC Annual Clinical and Scientific Conference, Québec City, QC  |  June 9-12, 2015

CHS Sainte-Justine health care team presented at the conference and helped out at the CHS booth. On the picture, Medical Director Dr. Rochelle Winikoff, and Catherine Thibeault, nurse at the Sainte-Justine HTC at the time.

FAMILY MEDICINE FORUM at the Centre des congrès, Québec City, QC  |  November 13-14-15, 2014

Patricia Stewart, a Québec Chapter volunteer, providing important information to two medical students from Ontario.

Ontario volunteers Amy Griffith and Michelle Lepera, with their CODEROUGE bags, ready to raise important awareness about women and bleeding disorders in 2013.