Denise C. Sumner, MSc

In August, 1997 I was diagnosed with arachnoiditis after a second myelogram that  caused me much suffering. I was told very little about the disease and the significance of its influence on my future life was not apparent at the time. I typed the word Arachnoiditis into my computer to learn more. The effort to gather a portfolio of information was time consuming and frustrating in view of the difficulty of sitting caused by the second myelogram. And I still did not know how to deal with it in my daily life.  I wondered to myself, "Why is there not a website dealing with this disease as there is for other diseases?" That thought became seeded in my mind.

Married for over 34 years and with two grown children, I have been a certified school teacher in two states and received my Master's of Science in Counselling Psychology in 1991.  In 1979 and in the prime of life, age 39, my neck was injured and the diagnostic test to determine the nature of the injury was a cervical myelogram. In 1997 I had another myelogram to determine if the cause of my bizarre symptoms was cervical stenosis

After the diagnosis of arachnoiditis, I began gathering as much Information on arachnoiditis as I could find and joined two online support groups to learn more. In time, I came in contact with ASAMS through it's secretary, Lynne Emslie. She willingly shared quality information with me. My understanding about arachnoiditis grew to the point that I was able to encourage and give information to others with the disease.

In October 1999, Lynne approached the ASAMS committee to seek approval to expand ASAMS current services to include an online support group. This was agreed upon and ASAMS_Intl email support group was activated with Lynne being the list owner.  I intended to be a passive participant but began taking a more active part in an advisory capacity.  I was most impressed with the professionalism and quality of the New Zealand organization.

The idea in the back of my mind about a website grew. It occurred to me that  perhaps ASAMS could expand their website to become a comprehensive depository of data on all aspects of arachnoiditis and its related challenges. Their zeal and commitment to global education was obvious.

That seed planted during my quest for information had sprouted. I approached Lynne with the idea. I wanted to see my dream come true so that others would not have the difficulty I had in accessing quality information on arachnoiditis and its effects on all aspects of a person's life.

Initially I was told that ASAMS would not be able to expand their site so I asked Lynne if she would help me to build a website from scratch using  sponsors from the USA.  Had she said no, this website would not be here today. We had never undertaken such a venture but were eager to learn. We knew it would take   time due of our health problems and family commitments but we believed this to be a very important project, sorely needed for people with arachnoiditis.  Our goal to provide a resource of quality information was launched.  Several willing assistants from within the email group generously gave of their time to assist in the information seeking process.  This was most appreciated.  

Later I received good news that ASAMS would be able to sponsor the website after all. This opened doors to information we would not have been able to obtain in a private site. The co-operation of the Patron of ASAMS, Wendy Anderson, MD has been invaluable. I am most impressed by her wisdom, humility, intelligence, and commitment to educate people about arachnoiditis despite her own disabilities. She has been a great help in guiding me along the way as we have communicated via email and telephone.  The articles she submitted to the website have added insight into the disease and are important reading. I feel privileged to have co-authored an introductory article on arachnoiditis with her for the website.

Another outstanding assistant in the project has been Sarah Smith, MD, Patron of the Arachnoiditis Trust in England.  She has been with us from the start advising along the way. The rich supply of articles she has contributed are some of the most current information available on arachnoiditis that were gathered from her research directly with patients with the disease.  Having arachnoiditis herself has not stopped her from working with us throughout the project. All persons with arachnoiditis will benefit from her quality work.

We were thrilled when Charles V. Burton, MD, (http://www.ilbnc.com)  generously gave permission for ASAMS to include information from his websites. As an expert on arachnoiditis, his suggestions and contributions to the website are most important.

No one knows how many people have arachnoiditis. The idea of an international registry made sense in order to determine the prevalence and gather demographic information about the disease. Once again I approached Lynne and asked her if she would submit a request to the ASAMS committee to see if it would be possible for them to add this feature to their growing services and they agreed. The registry was placed on the existing website until the new one was completed. Hopefully this  very important feature will play a role in encouraging research into this "orphan disease" once the true incidence of arachnoiditis world-wide is known.

Working from the privacy of my study, mostly at night and over many months,  the site began to materialize.  The co-operation of those permitting us to use their material by phone, email, and snail mail was most impressive, thus providing for a rich supply of important material.

Though the complexity of the work was not appreciated in the beginning but  became  evident as we began building on the basic outline. At times it was overwhelming.  Though on opposite sides of Earth, here we were, two women putting together a large website that usually takes a large team to do. We never gave up. We planned the layout of the site and its various features giving one another encouragement throughout the project.   Despite "Murphy's Law"  interfering along the way, we finally reached our goal. We called the final product my "website baby." Born of an idea during my struggle to access information, the basic website now has ASAMS as its parent, to raise, expand and improve over time.

It is hoped that the information contained in this website will prove beneficial to all interested parties, fostering greater understanding about the disease and its causes. We look forward with hope that very soon  efforts will be made to find better treatments, provide more effective pain management, and for the medical profession to begin research to find a cure.

It has been a privilege to have had a part in bringing the first comprehensive website on arachnoiditis into existence. I thank ASAMS for sponsoring this important work thus advancing arachnoiditis education world-wide.

Sincerely,
Denise