Wednesday, September 25, 2013

Rome 2013

In my role as a director to Debra Canada I was part of the Canadian contingent participating in a yearly Debra Congress.  I have already made my way to two previous Congresses, but for the most part on my own accord and for reasons directly related to my role as a parent for a child with RDEB.  This time was quite different and the information I obtained strangely enough was more directed to my role as a Director of Debra Canada and as voice being able to guide our programs and research.

It is very difficult coming into a rare disease such as EB with so many complex issues that require large teams of medical specialists and that understanding the science behind it has been a steep upward climb with very little traction till this point.  It has been clear up until this congress that asking somewhat simple questions to those in the science field has lead to very little extra understanding.  Medical terminology coupled with a vocabulary that I've never been a part of leaves me often in silence with a glazed dumb look on my face.  Frustrated at an inability to comprehend what seems second nature to these people is very hard to accept.  I guess not so hard that I haven't had a medical dictionary open learning the communication skills to keep up.

This time however was slightly different.  I was able to befriend a Chief Scientific Officer of a drug development company whom was able to impart some building blocks for me to question and in a way have a valuable bullshit detector from what we are told and hear.  Data is king of sorts.  There were certainly moments that he too made me feel my incompetence, but once I exclaimed my glazed over eyes in the middle of one of his sentences in a self deprecating manner we seemed to have got on very well from that point and the more we talked the less I felt like the kid sitting on the bench while everyone else played the 'GAME'.

The talk of a cure and beneficial treatments are shot at us in every congress.  Yet, the reality of these treatments impacting my daughter's life are few and far between.  We must rely on the Best Practice Guides to be sure our medical professionals understand the nature of the disease in terms of it's life curve.

It certainly helps that I'm certain the more I learn and the more I see we've made many of the correct calls in Raqu's care.  I'm also very cognizant that much of what we do still needs to be questioned and reassessed so that complacency won't one day find us a corner.

As far as Debra goes in a very clear manner I've been able to narrow down a plethora of issues and ideas to a couple that I think are attainable as a small member organization. 

It's a wonderful feeling coming away with an empowerment by understanding what I know and what I need to know and the proper paths through it in areas that I can with Raqu and a few others to control and likely make a difference for the future.

At the outset of this trip there was a bit of an internal ethical battle of taking a valuable spot at this Congress that Debra Canada can somewhat afford, but I'm now confident I made the right decision to go and will be able to soon add benefit to our national chapter if not the rest.

By the way.  Rome is something special.  Other than Ren and my two girls I don't think I've ever fallen in love so quickly.

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