The feelings of isolation, frustration, anger, sadness, and constant fear that I might die before Drs. educate themselves so as to be able to help ARD SUFFERERS.
The research and funds are very limited to make better barriers in the U.S. ( as I have read people are having to go to Germany and Australia for the one barrier that is working!). A limited number of researchers in other countries are battling "ALONE" the actual cell research to end total growth of Adhesions. I struggle endlessly not to have a totally broken spirit.
It make one wonder, if someone Famous was sick with ARD and went public, how many millions of dollars would then become accessable. I'll bet the RESULT WOULD BE AMAZING!!
In looking at various research avenues, I came across a group on the Web called International Adhesion Society and also bombobeach.com
My isolation and silent suffering fell to the wayside, as the more I read story after story I saw there were so many others like me, fighting the same fight! I cried as I finally felt validated. I was no longer alone and it deeply saddened me to see that people were getting minimal, if any, health care or relief, such as I. There are alot of people sicker than I am. I soon learned that ARD is a recognized illness in only 2 states, New York and Wisconsin.
ARD sufferers have been humiliated, demeaned, turned away, belittled and treated with total disrespect and at times have been subjected to barbaric measures. We are "DEEPLY HUMBLED" from this illness and I will not give up until people " TAKE NOTICE" to ARD and begin to care. It doesn't require anything more than simple human compassion.
I remember a Dr. once saying to me " YOU adhesion cases are the most frustrating to all us Drs..", with total anxiety in his voice. As my tears fell freely I replied " If it is frustrating for Drs., can you IMAGINE how the patient must feel?!?" " We live with this EVERY day without care or concern from Drs, no validation that our pain is real."
Education and research are the utmost important keys to helping in this battle of ARD and I will remain a WARRIER in the battle until ARD is widely recognized.
I invite and challenge every person with any human compassion and empothy for humanity to visit these 2 web sites, log onto the quilt or ARD stories and I will guarentee, you have opened up to " OUR WORLD" that of the "INVISIBLE SUFFERER.
Please help lift the VEIL of DARKNESS and SEE THE LIGHT by helping us in our fight with ARD.
Sincerely,
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Shawna French