26 October 2016

There aren't answers at NACFC.

I am on a flight to NACFC (the North American Cystic Fibrosis Conference).  Last year was my first year to attend this few thousand+ person international CF conference made up mostly of researchers and health care providers.  As my plane approaches Orlando International Airport, I find myself reflective of how much I have learned and how much I've changed since first attending NACFC last year.  

Last year, I was hopeful that NACFC would provide me answers to the problem of CF.  
This year, I know it will not.  

Last year, I looked forward to what I would gain by meeting with CF doctors.  
This year, I look forward to what I can bring to my meeting with CF doctors.  

Last year, I sat in the audience anxiously looking forward to new initiatives put forth by the CF Foundation.  
This year, I will sit in the audience with anticipation of the new initiative I helped the CF Foundation put forth.

Last year, I attended NACFC as a desperate mother.  
This year, I attend NACFC as a confident partner in my son's care.  

I am attending NACFC this year, not because I believe I'll find answers to my questions, but because I want to be among the thousands of people who are trying to do the same.

I remember being so upset last year when I realized how much doctors & researchers *don't know* about CF.  I was so disappointed to learn how much of CF care is prescribed without clear evidence of it's benefit (this goes for all health care, by the way).  It's hard to hear, at the end of a session, a researcher report how much more research on a specific topic is needed to be done to gain useful conclusions.  

What I had to learn the hard way at NACFC is: CF is a complex disease.  The more we learn, the more we realize what we need to learn.  Ultimately, this is good news because research begets research...and eventually, answers will (and do) come.

But, as a mother desperate for relief of this awful disease now, this is a hard pill to swallow.

I come to NACFC this year with more realistic expectations.  I'm no longer expecting answers.  There aren't answers at NACFC.  There are people at NACFC.

There are really great people at NACFC - people who are focused on finding a cure, people who are focused on healing the lungs, people who are working to improve insurance barriers, people who are develop new ways to identify improvement, people who live with disease and are willing to challenge the status quo.  

Each person is a learned expert.

What I have learned in the last year, particularly in my work with the CF Learning Network and with CF Insight Project...what I come with to NACFC this year that I didn't have last year is the realization: 

It's not the learned experts that have the answers.  They simply have knowledge. It is our working as a team by which we will together discover the answers.

People and families with CF, doctors, researchers - none of us can improve CF care without the other.

This greater understanding of each of our roles in curing CF significantly helps me in my relationship with Bennett's clinical staff.  Recognizing my son's doctors aren't reservoirs of information, or gatekeepers of the answers to CF, nor are they future tellers.  They are just humans - highly educated humans, yes - but humans nonetheless.  They need me.  I need them.  

So, this year, I go to NACFC less desperate and more self-assured, less looking for answers and more looking for connections, less feeling like I'm out of place and more confident I'm in the right place.

I imagine a NACFC that will one day be full of sessions and posters where the speaker/author titles aren't only names followed by "M.D.s" and "Ph.D.s" but names followed by the words, "CF mom", "person with CF" "CF Dad." 

We, the people,

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