Hi Peter and Elena,

Peter, I have the same kind of feeling of desperation... when, where and how will effective treatments - stem cell - become available and affordable?

For me, part of the problem is that I was one of those pioneer, rebel rouser types who believed nothing was impossible and one could always do someting to help onself.  But over 20 years of suffering has really worn me down, to the point where my friends, family, barely recognize me.

I was once so enregetic, friends used to joke that I made Liza Minnelli look depressed.  I was always smiling, always looking forward to the next big adventure.  Now, at age 51, I am so worn out.  I wake up exhausted, laying in bed for hours sipping morning coffee until I can literally will myself out of bed.  I try to get out, but I don't want to see anyone because I'm so exhausted.  I never smile anymore and if I do, it's a forced smile, one that I have perfected so I don't hurt anyone's feelings.

My way of coping is to be exceedingly silly.  In fact, I would often joke with my friends that having ENS was so dead sexy!  Really, because it is that absurd that I have to joke!

Recently, I have decided to reach out to others... make friends with more ENS sufferers.  Why?  Because they know excactly how I feel, and honestly, as much as my friends and family care, they jut don't know what it feels like to suffocate every second of every minute of every day, week, month and year after year.  In fact, I believe suffocation is one of the tortures described for those who suffer eternal damnation!  Gheesh!  I'm a good kid!  Gimme a break!

Here's my two cents on this:  I used to be the executive editor of a political magazine out of Cambridge, MA.  What I learned about activism is that those groups who organize an effort (fundraiser, awareness campaign, etc) with clear objectives, a clear overall goal and sub-goals, plus clear tasks to complete sub-goals are THE most successful!  I have seen a million failed campaigns and a few spectacularly successful campaigns!

Organization is the key.  Organizing ENS sufferers from around the world into a common goal with the above criteria laid out, helps each person to know exactly what his role is in accomplishing the overall goal.

We'll be okay... But we have to stick together... <3

Edited 1 time by yobuck285 Feb 1 15 4:34 PM.