Advancing Education and Understanding

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RENA ERWIN
Director of Administrative Services
rena@actionscount.org

Hi, my name is Rena Erwin. I am a caregiver and a stay at home mother of four. I first heard the word ARACHNOIDITIS on February 24, 2000. I will never forget my first thought..."I have a thing about spiders, too!" Oh, how I wish it were so simple.

I contacted NORD to find more information than what the doctor had provided. I read what they had to offer, and I kept thinking that something was missing. I subscribed to Internet service so that I could do some research of my own. I was amazed at the information that is available to the public, yet the public organizations I had contacted seemed to know very little.

I became involved with some sufferers of ARACHNOIDITIS, and began to hear the horror stories of how they were treated. I decided that something should be done. I began a letter-writing campaign of my own, and while I have gotten some positive response, I believe that there is strength in numbers. The more of us who band together, the more attention we will get for this horrendous condition and the intractable pain that it causes. My hope is that we can somehow bring this condition to the attention of our Legislative System, our healthcare providers, and the public in general. We should educate everyone about the causes of this condition and compel our leaders to take necessary steps to insure the safety of the people.

It was my desire to be active in making a difference, and the belief that every person who suffers deserves a truly safe place to learn and discuss the aspects of this condition, that led me to be a part of creating the ACTIONS support group