The Rest of the Story

This is the most memorable experience I had this year:

A few weeks before the Narcolepsy Network conference they sent out an email asking for volunteers. They asked for PWN to tell their stories on videotape and participation would be first come first served. I replied in nine minutes. Heh. Told them I had a great story.
It took them a while to get back to me, but I did get an appointment for Friday night at 7.

When I got there they made me sign a release saying they could use my footage.  And then they gave me a list of ten questions they would ask, and told me to think about my answers. After a few minutes we went into a side room and I sat on one side of a big conference table with two of them on the other side with the video camera.  Here's my paraphrase of what happened:

-How long have you had narcolepsy?
I've had narcolepsy and sleep disorders all my life, but I wasn't diagnosed until I was 45.

-How do you treat your narcolepsy?
I am a medical librarian and after I was diagnosed I started doing research.  I read that the DQB1-0602 gene is also associated with gluten intolerance.   I went on a gluten-free diet and my symptoms disappeared in three weeks.  Symptoms I had my entire life.  I have been in drug free remission for five years using the diet.  It's extraordinary.

-I see. So how has Narcolepsy Network helped you?
You haven't.  I have been trying for five years.  First I wrote to Dr. Mignot and sent him my research.   Then I contacted everyone on your board, and nobody responded. I spoke to your president Patricia Higgins personally and after telling me she was recently diagnosed with gluten intolerance herself, she actively avoided me. I went to the conference last year and handed out information.  I now have dozens of reports of similar results from other narcoleptics.  I keep coming back because I want to find someone who will research this.

-Well thank you very much for your story...
And they turned the camera off and showed me out the door.

I suppose you can guess they haven't contacted me since.