To get it up as quickly as possible I have posted it in installments on the bombo message board.
I am calling this an arm to ACTION!! It is TIME that we took control of our destiny & started to help ourselves and get this disgusting and continual miss-treatment of ARD sufferers around the world stopped NOW!
Our dear Nancy from Canada put a simple tag on her personal emails, alerting us to the "Invisible Disabilities Week" in September. I believe that week is our opportunity to be heard, PLEASE come to bombo, read Annie's story on the message board, and then follow the instructions I have left on the message after Annie's story.
Our own sweet friend Karla is almost lost to us, we already have tributes to other ARD sufferers who have lost their battles to ARD on the Adhesions Quilt on this site. How many MORE tributes will it take before we all make OURSELVES accountable and do something for ourselves??
Yes, we are in pain, yes we have limited time, funds and strength BUT we all find the time to visit each other on this board. All I am asking for is a phone call, email or letter to be sent to your local media outlets, PLEASE I urge you to come to http://www.bombobeach.com and read Annie's story on the message board. IF you are unfamiliar with Karla's story it is here on the quilt and also on bombobeach.com under "ARD Stories".
I look forward to your messages telling me what YOU have done to make "Invisible Disabilities Week" work for us.
Love & warm gentle hugs, Jo
-- Love and gentle hugs, Joanne Eslick Founder Australian Adhesions Support Group http://www.bombobeach.com NSW Australian Co-ordinator of International Adhesions Society http://www.adhesions.org
-- I am not a medical person, and all my messages are based on personal experience. I am a fellow adhesions sufferer reaching out to help others.