Natalie Philbert
Hemophilia Ontario
Amy Griffith
Hemophilia Ontario
Dr. Paula James
Professor, Hematologist, Department of Medicine, Graduate Program Director, Translational Medicine, Queen’s University
Mediaplanet connected with thought leaders Natalie Philbert, Amy Griffith, and Dr. Paula James who shared their insights on women with bleeding disorders.
What are the most common bleeding disorders to affect women?
The most common bleeding disorders that affect women are Von Willebrand Disease (VWD), Hemophilia A and B (Hemophilia Carriers), Platelet Function Disorders (PFD), and other factor deficiencies (such as FXI deficiency). Some people include disorders like Ehlers Danlos Syndrome in the list, and although it’s not caused by a problem with a hemostatic protein, it does present with bleeding symptoms.
What misconceptions are there around common bleeding disorders and why is this important to note?
The most common misconceptions are that women can’t have a bleeding disorder. Historically, men have been the focus of bleeding disorders, which has created many misconceptions for women with bleeding disorders. As a result, there can be a dismissal of symptoms, lack of diagnostic investigation, and no treatment offered for bleeding symptoms. Even when women might feel there is something not right, they can find themselves ignored and dismissed.
Even when women might feel there is something not right, they can find themselves ignored and dismissed.
What barriers exist in diagnosis, treatment, and care?
The misconception that women can have a bleeding disorder is a major barrier. Raising awareness to undiagnosed women who may have a bleeding disorder is a challenge as many women are unsure of what constitutes a bleeding disorder. There is also a lack of understanding about normal vs. abnormal bleeding (especially for gynecologic/menstrual bleeding and post-partum bleeding), the lab tests required to make the diagnosis are highly specialized and not widely available, and there has been a historic lack of consensus around diagnostic thresholds and nomenclature. Bleeding in women continues to be a taboo topic in many areas and much of this is impacted by sexism, which is ingrained in our medical system. As a result, resources specifically targeting women with bleeding disorders are minimal and the resources that are available are not shared widely or well known to the women who need them.
Can bleeding disorders be inherited? How can Canadians address this and support their families?
Yes, VWD and PFD are usually autosomal dominant (which means you get them from one parent) but more severe forms can be inherited from both parents. The hemophilias are sex-linked, which means the mutations that cause disease are on the X chromosome. The rarer factor deficiencies are usually inherited from both parents, but there can be cases where it only comes from one. There needs to be recognition when a new diagnosis is made, that other family members are at risk, and appropriate referrals made for diagnosis and management. Patient organizations like the Canadian Hemophilia Society and Hemophilia Ontario are important players in terms of raising advocacy and awareness.
What resources are available for women? Are there benefits to connecting with a support group?
There are some key resources for women. Hemophilia Ontario has placed women as a major priority and there are women with bleeding disorder programs offered throughout the year that provide support, education, and information to those who attend, including relevant resources. These programs are designed with specific topics in mind and provide education and opportunities to connect with other women with bleeding disorders. Hemophilia Ontario is currently expanding its website to offer a wide variety of resources for women and is looking at innovative resources to support women with bleeding disorders.
Another excellent resource for women is the Let’s Talk Period website that aims to increase awareness of the signs and symptoms of bleeding disorders. Dr. Paula James and her team developed a self-administered bleeding assessment tool (Self-BAT) that women can fill out themselves and see if they should speak to their doctor for further assessment.
We suggest you check out these resources and reach out to Natalie Philbert ([email protected]) at Hemophilia Ontario for any questions or more information. As more attention is given to women with bleeding disorders the resources will become more plentiful and well known.
Does this apply to you?
- Do you ever feel like your periods are too long or too heavy?
- Do your gums bleed frequently when you brush your teeth?
- Do you have frequent nosebleeds?
- Do you bruise easily?
If any of these sound like you, you may have a bleeding disorder. It is estimated that 9 out of 10 people are undiagnosed. If you think this could be you, please check out the following resources or contact us at: 1-888-838-8846 or [email protected]
Other support Hemophilia Ontario offers:
Financial Assistance
Advocacy
Educational Programs
