HOW TO FIND OUT IF YOU HAVE A BLEEDING DISORDER

While the idea of being diagnosed with a bleeding disorder can seem intimidating and overwhelming, being unaware can cause even greater problems. The Self-BAT was born out of the need for an increase in awareness and knowledge around what is often a treatable disorder.

We are delighted to share with you this interview with Dr. Paula James, below, on the importance of awareness.

Why is it so important to know if you have a bleeding disorder?
It’s important to know if you have a bleeding disorder because effective treatment is available, and without effective treatment patients are at ongoing risk of bleeding especially when exposed to bleeding challenges like dental work, surgery or childbirth.

How did Let’s Talk Period and the Self-BAT (Self-administered Bleeding Assessment Tool) come about?
The Self-BAT evolved out of a desire to educate people about normal vs. abnormal bleeding and to put a useful tool in the hands of the general public. Our previous work was on expert administered bleeding assessment tools, which are useful if a patient actually makes it to see a doctor about bleeding, but we were concerned about those people who might not realize that their bleeding is abnormal, or those that realize it but need some extra support or information to go the next step. Or unfortunately, to try and put something validated in the hands of those who know their bleeding is abnormal, and have talked to their doctor, but were told there was nothing to worry about.

The idea for Let’s Talk Period started with discussions with a summer student of ours (Malak Elbatarny, who is now a Queen’s medical student) about ways to disseminate education on the subject.  

Is there a pre-cursor to the Self-BAT? What did those with bleeding concerns have to do before this was available?
The precursors were BATs (Bleeding Assessment Tools) that had to be administered by an expert. Before the Self-BAT, people (if they were concerned about bleeding) would/could go see their doctor, but sometimes the response would be less than ideal. Over and over, I hear from women who say “I thought my periods were abnormal,” (or my iron deficiency anemia was abnormal) who didn’t get the proper attention.

Is this kind of public-facing research/disease awareness common in your field?
I’m not totally sure, but around here it is seen as pretty novel. There certainly are other websites designed to provide information to people about bleeding – here is another that I have heard about:  http://beyondthebleed.com/.

There is a trend towards giving people access to their own medical information online (with proper warning and explanation), and we’re happy to be able to empower women to learn more about their health.
To learn more about effective treatments or to continue the conversation, please get in touch with us by writing to us at the bottom of our website homepage. Join our communities on Facebook and Instagram to get regular information about bleeding disorders and help other women be empowered by this knowledge.