Tuesday, September 17, 2013

Advocate? Who Me?

Over the last year or so I have become increasingly active about getting the word out about Lynch Syndrome and I have an amazing opportunity coming up in just a few weeks.

When I started on this journey just over 3 years ago I was lost.  I started my blog because I could find no information about people going through what we were going through.  Blogging was a way to get some of the stuff "out of my head".  When I discovered people who didn't even know me were reading it, I was floored.  Obviously, I wasn't the only one.

Never in a million years did I think Facebook would be more than just a way to catch up with friends.  Then I stumbled across "Colontown - Where Experience Reaches Out".  Erika Hanson Brown, Mayor of Colontown,  has made it her life's work to reach out to other people who are experiencing colon cancer and other "colon related" issues.  Over time I have been more and more involved with Colontown and am a co-administrator for the Public page of Lynchville, a Colontown neighborhood.

This past weekend Mike and I attended Mayo Clinic's Living with Lynch Syndrome conference in Minneapolis.  We had gone two years ago just after finding out Mike had Lynch.  There were maybe 60 people in attendance.  This year nearly 200!  Word IS getting out about Lynch Syndrome.  Unfortunately, there are still only about 5% of the Lynch population that actually is aware they have Lynch.  The conference was a good refresher, although emotionally draining.  The world became a little bit smaller for a day as I met my Colontown friends in person for the first time and we talked with people who really understand what it is to live with Lynch Syndrome.  Or to be someone who loves a person with Lynch Syndrome.

Lynch Syndrome is a part of our life and it always will, but it does not define us.  It is not a life-sentence, but rather an explanation for something that seemed so unbelievable.  A healthy 37 year old getting colon cancer?  It makes sense now.  Unfortunately there are a variety of other cancers Mike is at a higher risk for, but annual scans and other screenings will keep us one step ahead of cancer. 

Patient Advocacy

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