About the IN Group

The Inflammatory Neuropathy Support Group Of Victoria Inc.

Supporting sufferers from acute Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).

The IN Group is a non-profit association that provides support to Inflammatory Neuropathy (IN)patients, undertakes research into the cause, treatment and prevention of the illness, and promotes understanding of the condition and its effects.

Patrons, Consultants and Committee
About Inflammatory Neuropathies
GBS
CIDP
The IN Group
The Aims of The IN Group

Patrons, Consultants and Committee

Professor J G McLeod, Department of Medicine, University of Sydney
Associate Professor J D Pollard, Department of Medicine, University of Sydney
Dr B S Gilligan, Head of Neurology Department, Alfred Hospital; President, Australian Brain Foundation
Dr R J Stark, Chairman, Victorian State Council, Australian Association of Neurologists

CONSULTANTS

Neurology - Dr Bruce Day
Epidemiology - Dr Allen J Christophers

COMMITTEE

Director - James H Gerrand
Deputy Director - Sister Katy Fielding
Secretary - Vilma Clarke
Treasurer - Norman Blyth
Melva Behr
Betty Gerrand
Sister Trish Hooton
Margaret Lawrence

About Inflammatory Neuropathies

Inflammatory neuropathies destroy the sheathing of nerves. Technically, they are demyelinating neuropathies characterised by the infiltration of peripheral nerves with lymphocytes and macrophages. They can be divided into two broad groups: those with an acute onset and rapidly progressive course (Guillain-Barré Syndrome - GBS) and those with a chronic course (Chronic Inflammatory Demyelinating Polyneuropathy - CIDP).

GBS

Certain characteristics typify GBS.

GBS develops over a relatively short period, over several hours to several days, and rarely takes more than four weeks to reach maximum severity.
The major symptons include muscle weakness and, often, some abnormal sensations, including tingling, numbness, lack of sensation, pain, vibrations, etc.
Both the weakness and the abnormal sensations tend to be equal on both sides of the body, helping to distinguish GBS from other neurologic disorders such as a stroke.
The muscle weakness and abnormal sensations typically ascend the body, starting in the legs and ascending into the chest and arms and even the face.
The degree of involvement can vary. Some patients have never to be in hospital because all they have are some funny sensations and a waddling gait. At the other extreme the illness can cause almost complete paralysis so that eye movements are abnormal, the face droops and the breathing muscles are too weak to let the patient breathe unaided.
When doctors examine patients with GBS, they usually find extremely decreased or totally absent reflexes such as the knee jerk.
A spinal tap will reveal that the protein content of the cerebral spinal fluid is elevated but without increased pus cells.

The patient should be aware of points 1 to 5.

The recurrence rate of GBS is rare, of the order of 3%.

The natural course of GBS cannot be predicted. Perhaps half recover completely or almost so. Less than 5% die, usually from heart or lung complications. The remaining 45% have some variable degree of long term disability which may be minor such as a waddling gait.

CIDP

Doctors also recognise a disorder which is similar in symptoms and medical findings of GBS, but which develops slowly rather than rapidly, and can reoccur at a more frequent rate than that for GBS. This disorder is named Chronic Inflammatory Demyelinating Polyneuropathy - CIDP. Medical treatment is similar to that for GBS - a trial of various approaches that had some success include plasma exchange to reduce the blood protein level, corticosteroids such as prednisone, drugs Imuran and Cyclosporin as used to treat autoimmune disorders, and most recently courses of intravenous dripping of gammaglobulin.

CIDP appears to occur more rarely than GBS, although this may be due to the greater difficulty of diagnosing a disorder that progresses slowly.

The first project of the IN Group is to determine through the assistance of neurologists the incidence (number of cases per year) and prevalence (number of cases per population) in Victoria of both GBS and CIDP.

Much of the above information is taken from an article by Joel Steinberg, MD 1987, published in the GBS Support Group (US) Newsletter, Vol 1 No. 9.

The IN Group

The IN Group has been formed to provide support for recovering and recovered Inflammatory Neuropathy (IN) patients, to assist their families and friends and the wider community in understanding the condition and its effects, and to undertake research into the cause, treatment and prevention of IN.

Our membership comprises current and former patients, relatives, friends and interested members of the public, together with eminent neurologists. We are similar to groups established in New South Wales (The GBS Association of NSW), South Australia (The GBS Support Group Inc. of South Australia), Tasmania (The GBS Support Group of Tasmania), UK (The GBS Support Group of the UK) and the United States (GBS Foundation International).

The IN Group differs from these associations, however, in that we cover

both the acute form of inflammatory polyneuropathy - known as the Guillain-Barré Syndrome - and the chronic form - chronic inflammatory demyelinating polyneuropathy.

The joining fee is $5, and our annual subscription is $10. Members receive a regular newsletter that keeps them up to date on developments.

The commencing project of the IN Group, as encouraged by Professor James McLeod and Associate Professor John Pollard, is to assess the prevalence and incidence of the acquired demyelinating neuropathies. To this end, a consultant neurologist, Dr Bruce Day, is sending a letter to all Victorian neurologists seeking their assistance in establishing The Victorian Register for GBS and Related Disorders.

As a current sufferer of IN, I have taken the initiative in forming the IN Group, and we are grateful for receiving the backing of the eminent neurologists who are our patrons.

James H. Gerrand
(Director)

The Aims of The IN Group

The IN Group is a support group for past and present sufferers of Guillain-Barré Syndrome and CIDP, and aims to spread the message about these rare nerve disorders.

We hope to contact new GBS and CIDP patients, their families and other interested persons wishing to join the IN Group.

Our aims are:

To arrange personal visits by former patients to those in hospitals.
To provide emotional support to patients and their families.
To publish a Newsletter, providing ongoing information.
To advise patients regarding resources for vocational, financial and general assistance.
To organise group meetings.
To encourage research into cause, treatment, prevention and other aspects of the illness.
To promote financial support for the Group's activities.

For further information, please contact:

James Gerrand
E-mail: ingroup@vicnet.net.au
Voice: +61-3-9853-6443
Modem: +61-3-9853-4990
Fax: +61-3-9853-4150
138b Princess St. Kew, Victoria 3101, Australia