Members of Team SJS just minutes before the start of the 2010 Fox Cities Half Marathon!

Friday, August 17, 2012

Every Month should be SJS Awareness Month

First of all, thank you Governor Walker for Proclaiming August as Stevens Johnson Syndrome Awareness Month in the State of Wisconsin!!!!  Thank you for recognizing the need for education and awareness.

Believe it or not, the 3rd Annual SJS Weekend is just around the corner and I am looking forward to spending time with fellow Survivors from around the world.  All of us together, spreading the news of SJS and what it can do, is never wrong.  There will be new faces this year and familiar ones as well.  Survivors of all ages and their families as well.  It's a weekend of laughter, of "tears", of strength and courage.  We come together to support each other, to build each other up and to help save lives with the power of knowledge.  Knowledge that most of us were never armed with.  Don't be confused by warning labels on medications or the empty words of doctors telling you that it is a "rare" illness, that it's a rash, that it is not likely to happen to you.  Maybe it isn't.  Maybe it won't happen to you, but it may happen to someone you love or someone you know.

There is no cure  for Stevens Johnson Syndrome or TENs.  There is no way to know how severe it will be for each person.  It is different for everyone.  Some of us had the rash, some of us blistered, some of us lost skin, some of us lost our vision, some of us can't cry, some of us lost finger and toe nails, some of us will never be able to have children, some of us can't even sit in the sun or handle bright lights, some of us now have COPD, some of us died, some of us survived for a few years and then died because of complications due to SJS, most of us live in constant fear of it happening again, and some of us have had it happen.

There is no opinion about any of that.  All of that is FACT!  I may not know all of the scientific reasons for why this happens or how it happens, but I DO know that it happened to ME!  I DO know  that I live with this every day.  Not some days, EVERY DAY!  And I DO know that I am doing a pretty damn good job of living my life.  Along with my family and friends, I have built a new life.  One from scratch, honestly.  I have started from the basics and progressed to training for a full marathon.  There are times that I wonder if I truly am capable of 26.2, but most of the time I know that I am.  I am a Fighter, I am a Survivor, and I will finish it.  The good with the bad, the things I am proud of and the things that I am not will be carried across that Finish Line.  But I will NEVER let ANYONE knock me down for good.  I may rise to the occasion, I may fall, but I will get back up.  Of that you can be certain!

No comments:

Post a Comment