Thursday, June 12, 2014

ECRD Attendance Opens Door to Narrative Medicine

My ECRD Berlin 2014 Word Cloud
Sponsored by the National Gaucher Foundation of Canada, I had the recent opportunity of attending the large European Conference on Rare Diseases, held in Berlin this time. One of the reasons I was attracted to the conference was because it was broader than my regular Gaucher disease interactions, in the North American context, even broader still than the lysosomal storage disorders umbrella I was accustomed to, yet somehow, I initially felt alone in the big room with 700 attendees. It took meeting members of the European Gaucher Alliance, during a poster session, to settle-in to the European landscape I was so eager to join. Meeting others with a shared medical experience facilitates getting comfortable in a new environment and quickly leads to rapid story swapping, where the head nods are sincere and you don’t have to keep stopping to explain yourself. I later realized, that it was my first time meeting in person other people living with Gaucher outside of Canada and the USA.

Of course this wasn’t just about Gaucher, and having a place to present my poster, “Storytelling for Health”, made it possible to connect with many people who expressed a genuine interest in the role of stories, beyond the typical lip service given to the need for patient voice. I was actually left with the strong conference impression, that in Europe, the patient community is in fact at the front and centre of the rare diseases movement, which is surprisingly not always the case. The opening plenary session presented a number of individual patient video stories to illustrate the key conference themes that would be discussed. There was also not just strong attendance from patient organizations, including patients and caregivers, but also many speakers from the patient community, with a variety of relevant workshop topics to select from, versus the typical single non-scientific option (lack of option). Slides from all the presentations have now been made available on the conference website. This is an incredible offering for those who were unable to attend or, if like me, you found sessions of great interest to be overlapping in the scheduling. Many of the posters presented are also accessible online.

With so much post conference information available on the Internet these days, I sometimes wonder if it’s worthwhile to actually attend conferences. From my perspective, I might never have found the narrative medicine field of study if I hadn’t been there, looking-out for such a thing. With my keen and vested interest in storytelling, I’m a bit embarrassed to admit that I knew nothing about this topic beforehand. Sometimes even Goggle isn’t enough to point us in the right direction and we need human guides instead. My guides to this new world came from the poster presenters who made specific mention of narrative medicine and offered inspiring real-world examples of this work within the rare disease community:
•    From Life Stories to the Healthcare System: Narrative Medicine and Rare Diseases 
•    Pegasus, a winged horse carries hopes for rare diseases 
•    The Videotale ’Con Gli Occhi Tuoi’ (Through Your Eyes): An Alternative Method of Communication in Rare Diseases 

Beyond a hunger to learn everything I can about narrative medicine, I also left the conference with a now treasured copy of the illustrated storybook, Mauricio of Uruguay, and with it, the fruitful introduction to the life, art and illness narrative of artist Mauricio Saravia. Don’t miss the incredible story of the boy who had to have the weeds inside his body pruned.
I’ll also add that, from awareness gained by conference attendance, I've signed up and started the online  European Patient Ambassador Program. This free educational program is great training for strengthening your voice as an informed patient advocate.

Many thanks to the National Gaucher Foundation of Canada for making this venture possible. 
-post by Emma Rooney 

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