As a speaker, Dr. Paula James has been able to discuss Let’s Talk Period at several conferences. In May, Dr. Paula James spoke at the 2017 Canadian Hemophilia Society Toronto Rendezvous, where she gave a talk entitled What Can We Learn by Studying Desmopressin Responses in Hemophilia Carriers?. At the end of this presentation, she was able to showcase Let’s Talk Period and its success. In September, she presented at the Women’s Wellness Conference by Hemophilia Ontario, where she gave another talk entitled Let’s Talk Period: Women and Bleeding Disorders. Then in October, Dr. James presented on Women and Bleeding Disorders and gave another talk called VWD: Understanding the Basics & Treatment and Care of Women and Girls with Bleeding Disorders at the 18th Australian & New Zealand Conference on Hemophilia & Rare Bleeding Disorders.
Fortunately, we were able to sit down with Dr. Paula James for a quick second to get her observations about LTP’s reception from professionals and users!
Q: What is the feedback you get from other researchers/clinicians when you go to conferences and present LTP?
A: The response I get most from researchers/clinicians is surprise. My colleagues are always so surprised by the number of website hits, Self-BATs and the overall Facebook reach. I also usually get lots of suggestions for future directions of the project. People are definitely interested in what we’re doing and excited about the potential of using social media in positive ways.
Q: What is the feedback you get from patients when you go to conferences and present LTP?
A: We always see a surge of activity on the site when I present to patients. I think many of them hear about it and want to check out the content, and take the Self-BAT for themselves. I suspect this often starts while I’m still at the podium – I always see people pull out their phones once I’ve given the URL for the website. I’ve had many women come up and thank me for what we’re doing – the most memorable was a hemophilia carrier in Toronto who approached me at the CHS banquet to thank me for making her daughter’s life better than her’s had been. She had really suffered from unrecognized bleeds in the past. I was really touched and completely humbled, but most important, motivated to keep doing what we’re doing.
We’re so glad that the feedback has been overall positive, and we’ll continue to spread awareness!
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