About This Website
From Small Beginnings: ASAMS' History

Lynne Emslie, Secretary
Arachnoiditis Sufferers, Action and Monitoring Society (ASAMS) New Zealand Incorporated

I remember getting a phone call from my next door neighbour one morning explaining that there was an article in the paper mentioning all the symptoms that I had been describing to her. I couldn’t believe that it was really there and was in fact bewildered and confused, as I had always been lead to believe that my symptoms were “all in the head”.

A public meeting was called in Wanganui. There would have been at least 50 people present who had all come together because of this article; this was just one small city in New Zealand. All told their stories one after the other, many with tears, they were as bewildered as I was. But the main emphasis was that we were not alone after all.

This lead to the filming of the Television program 60 Minutes “A Shot in the Back” aired nationally in November 1995.

In the meantime there were another two public meetings held with several hundred more inquiries from all over New Zealand made through the Whanganui Disabilities Resources Centre.

It was established during this time that a support group was urgently needed for people suffering from the disease arachnoiditis, most of whom had been diagnosed many years earlier but never knew or understood what arachnoiditis was.

This became the catalyst for many people becoming members of the “live” group looking for all the information and support they could find, to supply to their doctors and families. There was a new type of understanding and acceptance emerging. It was during this time that the organisation grew, not only in membership but also most importantly in the support and information sector.

The Arachnoiditis Sufferers, Action and Monitoring Society Wanganui was formed and incorporated in early 1996. The Society is controlled by a constitution and has an executive committee as its leadership. The committee consists of Chairperson, Vice Chairperson, Secretary, Treasurer, plus several more committee members.

1997 also brought an invite to a fellow sufferer and doctor to the position of Patron. Dr. Wendy Anderson accepted this role and has been an invaluable asset to ASAMS ever since. Her dedication and caring has been overwhelming.

It was during this time that we applied for funding to the various charitable trusts. The first to the NZ Lotteries Commission was successful and this enabled us to purchase the computer equipment plus the needed office equipment.

It was during late 1997 that the Internet became a very valuable tool for accessing information. This lead to the production of the bi-monthly news booklets containing interesting and informative articles combined with some light hearted reading. Within a very short time Specialist Booklets were being produced, all with permission obtained for reprinting and distributed in tandem with the news booklets throughout New Zealand to all members, disability service providers and disability information services. The idea has been so successful that it remains the format four years down the track. These booklets are also supplied to libraries and distributed widely around the world. All copies are always available to all that wish to receive them.

ASAMS has had several “firsts” in the world! The first was in 1998. With the help of a researcher we established the first research project dealing with “Red Blood Cell Shapes.” This is a blood test that distinguishes and tests for “flat red cells” which do not travel through the arteries as normal shaped cells, and thus cause a lack of oxygen getting to the main extremities. This in turn causes more tiredness and pain. It was found all participants had very high “ flat red blood cells”. The data collected is currently being correlated and results will be available in the very near future.

Another first for ASAMS. The first published thesis on “Living with arachnoiditis…” Christine Hopkins completed this thesis, which was part of her studies required to obtain a Masters of Arts degree in nursing. Christine has supported ASAMS for many years and works very closely with us.

In October 1999 ASAMS expanded their services to include an International arachnoiditis email support group (ASAMS_Intl’) this commenced with seven members on the first night and is now 200 plus with new requests for invites daily.

It was the goals of ASAMS_Intl’ as an international email group to strive and meet the needs of its members in as many ways as possible. Among its functions is focusing not only on caring and support and sharing with other members the struggles we daily face, but to provide the highest quality of scientifically documented information possible. To meet the fullest possible range of needs possible for an internet group, more was needed than just an email group in order to keep the support group focused on arachnoiditis issues. Therefore, to provide an outlet for expression of non-arachnoiditis related information a bulletin board was made available. Here people may submit wholesome humour, poetry, upbuilding stories, links to fun sites, and so forth. To further increase the level of communication between members a chat room was added.

Another first for ASAMS is to establish the first International Registry of all arachnoiditis sufferers. As arachnoiditis has always been classed as a “rare” disease it is our hope that this registry will demonstrate that it is not so “rare” and create avenues for research into the disease and hopefully lead to reduction in occurrences and better pain management.

The founding members of ASAMS established a clear vision of direction. This direction has remained the same to this day and will continue. It is perhaps best summed up in the following statements:

“To support all sufferers of arachnoiditis. To empower sufferers and non sufferers by having available a range of information on arachnoiditis and to raise the public awareness and understanding of arachnoiditis.”

“To create an environment of education leading to the empowerment of all sufferers of arachnoiditis and their families and to reduce future occurrences of the condition.”

 

ASAMS has for a number of years maintained a small website.

While other illnesses and conditions have websites that deal specifically with their conditions, there was not any similar site dealing with arachnoiditis and all it challenges. It was the dream of Denise Sumner and myself to be able to provide a comprehensive website, a “One Stop Shop” on arachnoiditis and its related challenges, that led to the development of this website.

Though in its infancy, our efforts will be ongoing to expand the quality and variety of information about arachnoiditis thus helping sufferers, their physicians, families and other interested persons to become more fully informed on its many aspects and effects as well as available treatments.

CONTACT ASAMS

Postal Address: The Coordinator

ASAM Society
39 Jackson Street
Wanganui
New Zealand

Email: asams.newzealand@xtra.co.nz

Special Thank you To Contributors of the Website

ASAMS would like to specially thank Dr Charles V. Burton, MD, Margaret Ann Hill, Dr Wendy Anderson and Dr Sarah Smith for their contributions of material, and especially their support and dedication in helping ASAMS achieve their goals of getting arachnoiditis recognised and understood worldwide.

We would also like to thank all the authors and websites who have kindly allowed us to use their information and links.

A very special thank you must go to Steve Emslie who without his help and support I would not have been able to have  been involved in helping  to organise this new website.

We would also like to express deep appreciation to those whose contributions in various ways have made the ASAMS website possible

Our thanks to:

• Wendy Anderson, MD (Patron for ASAMS)
• Lynne Emslie (Secretary)
• Steve Emslie (Treasurer)
• Dr. Sarah Smith, MD (Advisor)
• Denise Sumner MSc(Website Developer)

ASSISTANTS:

• GeriSue Buehner
• Julie Charlier
• Ian Clark
• Sara Ann Conkling
• Rev. Ronald A Davidson
• David Gaub
• Dorothy Granger
• Colleen McClanahan
• Anne McPhee
• Tom Rateau
• Sharee Sessum
• Kathy Stevenson
• Leslie Thompson
• Vicki Wolfe
• Sharon Braungart

The Arachnoiditis Sufferers, Action and Monitoring Society Wanganui Inc (ASAMS) acknowledge the support of the following organisations:

• New Zealand Lottery Grants Board – (Regional Welfare)
• New Zealand Lottery grants Board - (National Welfare)
• J.R. McKenzie Trust
• T.G. Macarthy Trust
• Trust Bank Wanganui Community Trust Inc.
• New Zealand Community Post
• J.B.S. Dudding Trust
• National Bank
• Rehabilitation Welfare Trust
• COGS