When it comes to bleeding disorders, Von Willebrand disease (VWD) may not be as well-known as hemophilia, but Dr. Paula James just might be the physician to change that.
James’ lab is the force behind Let’s Talk Period, a website launched in May 2015 aimed at raising awareness of heavy menstrual bleeding as a possible symptom of VWD. According to James, there is not a lot of accurate information available to the public on the topic, and many women do not realize their symptoms are abnormal. “Many of the patients I see in the Women and Bleeding Disorders clinic have been struggling with heavy periods for many years,” she explains.
Indeed, only 10% of people with VWD have been diagnosed and registered by the Canadian Bleeding Disease Registry. James laments this fact, because treatment for VWD is usually, in her words, “dead simple.” Treatment options include the Mirena IUD, birth control pills, endometrial ablation, hysterectomy, desmopressin, and in the most severe cases, IV infusions of Von Willebrand factor. Approximately 70-80% of patients have the least severe form of the disease, although James points out that with abnormal clinical bleeding, “it’s hard to know where the tipping point is.”
James states that the disease presents equally in males and females, but that women are more likely to be diagnosed due to gynecological symptoms. Fortunately, James and her team created a self-bleeding assessment tool, or self-BAT, that works for both men and women.
The self-BAT was the impetus behind the creation of Let’s Talk Period. “I always envisioned having a website, but I wanted to give people a tool they could potentially bring to their family doctor,” James says. The site contains a link to the self-BAT, which can be taken in English or French, by males or females. Developing the tool was no easy feat. Translating the expert-administered questionnaire into plain language was not enough to help patients understand exactly what they were being asked, so an larger overhaul was required. The team then had to make sure the self-assessment scores matched the expert scores during the trial period. The result was a product that allows patients to assess their bleeding scores and print their results. Test takers can even refer friends or family members to the self-BAT through social media. James' work is an example of patient outreach tailored to the digital age.