The statistic says it all: one in 1,000 individuals has a bleeding disorder, but most don’t know it. It can be hard to determine whether bleeding is ‘normal’ or cause for concern.
A bleeding disorder is a condition that affects blood clotting. Under normal circumstances, our blood begins to clot – or coagulate – once we’ve been cut or injured. This transition from liquid to solid prevents us from bleeding to death. We produce 13 different clotting factors, and a defect or deficiency in any of them can lead to a bleeding disorder either inside or outside our body.
Worldwide, there are 197,000+ people with hemophilia, and 76,000+ with von Willebrand disease, the two most common types.
A bleeding disorder may also affect a woman’s menstrual cycle, with many girls and women not getting properly diagnosed or receiving the necessary treatment.
Dr. Paula James, an academic hematologist, knew that needed to change. As the Medical Director of both the Inherited Bleeding Disorders Clinic of Southeastern Ontario and the Women and Bleeding Disorders Clinic at Kingston General Hospital, she knows firsthand how often the condition remains undiagnosed and how rarely women took the initiative to voice their concerns.
To reverse those trends, Dr. James had a beautifully simplistic idea.
Through direct patient interaction, she recognized that too many women were not receiving proper care relating to menstrual bleeding disorders. She wanted to spearhead a movement to spread awareness of issues affecting women and provide assistance in diagnosing them.
“It’s not hard to treat women with bleeding disorders—in fact, it’s actually quite easy. It’s not complicated medicine; we have a whole list of effective treatments we can use. What’s important is that we make sure we are identifying the right patients and getting them to the right clinics so they can be cared for properly.” ~Dr. Paula James.
Years earlier, she had helped create bleeding assessment tools to quantify the types of bleeding a patient may experience. It was believed at the time that the tools would lead to more diagnoses and more referrals to bleeding disorder specialists.
It did not.
Dr. James and her colleagues decided to instead focus on the women themselves rather than the nurses, doctors, and other healthcare practitioners out on the front lines. They wanted to foster greater understanding and knowledge of the condition for those suffering from it.
And that led her to creating Let’s Talk Period, a website and social media campaign to deliver resources and assessment tools directly to those most in need of them.
The Self-BAT empowers women with the know-how and confidence to take control of their healthcare and treatment.
Let’s Talk Period evolved and was optimized via focus group feedback to reach its current iteration. The Self-BAT provides a printable results page and recommendation to visit a physician when it indicates abnormal bleeding. Users can bring that page with them to get the conversation started.
Dr. James hopes to further develop the site to include automatic links and referrals to local clinics when deemed necessary by the test.
As she tweaks and polishes the platform, Troon will continue to offer technical and development assistance.
In a word: phenomenal.
The website has since racked up thousands of unique visitors from over 80 different countries. The Self-BAT has been completed thousands of times, and hundreds have resulted in abnormal scores.
That means hundreds of women have been diagnosed and treated that otherwise may not have.