Opinion

Let’s Talk Period: Caring for women with bleeding disorders

We need to talk period. Period. We need to understand how to care for women with bleeding disorders – the red-flag symptoms, and the barriers women face in getting an accurate and timely diagnosis.

My lab aims to improve the lives of patients with bleeding disorders. That’s why we have developed an online self-administered bleeding assessment tool (Self-BAT) that has been used by thousands of women around the world. Our latest work, published this week in the Canadian Family Physician journal, provides guidance for primary-care practitioners on what to do if patients bring in their Self-BAT result to clinic – or present with bleeding symptoms without a test.

To understand the role of our website, Let’sTalkPeriod.ca, you need to understand the scope of the problem – and the hurdles women face in having their symptoms taken seriously.

Research from Queen’s University shows that one in 1,000 individuals has an inherited bleeding disorder – however, far fewer are ever diagnosed. In Canada, that would mean there are 38,000 people with a bleeding disorder, even though our national registry shows that only 8,000 have been diagnosed. Most of the undiagnosed are likely women.

We know that women with a bleeding disorder who are lucky enough to get diagnosed wait up to 16 years or longer from the onset of abnormal bleeding symptoms. This is in stark contrast to boys with bleeding disorders, the majority of whom are diagnosed by age 10.

Every day I’m in clinic, I see women with heavy periods to determine whether they have an underlying bleeding disorder, and the stories I hear are so similar. “My periods last for 10 days out of every month, but so did my mother’s and so I thought it was normal.” Remember that we’re talking about inherited disorders and so abnormal symptoms can be overlooked within a family. Unfortunately, even more common is, “My periods last for 10 days out of every month, and I went to see my doctor about it, but was told that it’s normal.” Spoiler alert, it’s not.

“I went to see my doctor about it, but was told that it’s normal.” Spoiler alert, it’s not.

Patients like this will become iron deficient and anemic over time, struggling with symptoms of fatigue, poor concentration, poor school and work performance, hair loss and brittle nails. Patients say that being iron deficient feels like thinking through cobwebs or having cinderblocks attached to their feet. The fact is these symptoms can be entirely avoided with proper treatment.

Determining how much bleeding is abnormal is difficult because we all bleed when we are cut. That’s why, in the early 2000s, my research team started working on bleeding assessment tools (BATs). These are questionnaires that guide a health-care practitioner to ask a series of questions about bleeding symptoms, such as “do you have a problem with nosebleeds?”; if the answer is yes, “how did you get it to stop” and “did you have to see a doctor?” Based on the answers, a bleeding score can be calculated that helps predict whether the patient might have a bleeding disorder. Next, one of my MSc students converted the test for personal use on a computer or smartphone and the Self-BAT was born – which works just as well as the expert administered version. In 2016, we made it widely and freely available on Let’s Talk Period.

Our goal was to break through the stigma against open discussion about periods and provide accurate and accessible information. Our homepage highlights the red flags of a heavy period: periods that last longer than seven days, require a change of sanitary protection more than every hour, cause iron deficiency anemia or soaking through at night are abnormal. To date, the site has more than 300,000 page views from more than 190 countries; 32,000 people have taken the Self-BAT; an aligned Facebook page has had a reach of nearly 1.5 million. And we’ve heard stories from all over the world of people accessing the site, taking the Self-BAT, and getting a proper diagnosis of a bleeding disorder.

Make a point of paying attention if you or anyone in your lives has any of the features of heavy periods. We have the knowledge and tools to diagnose inherited bleeding disorders, and we are fortunate to have safe and effective treatments with innovative new therapies on the horizon. We can do better for the next generation and prevent a great deal of suffering.

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Authors

Paula James

Contributor

Paula James is a hematologist and professor in the Department of Medicine at Queen’s University.

Watch her research talk: https://www.youtube.com/watch?v=AuxiiL9fod4

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