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Winter is fading and spring is
transforming the garden into a colourful, lush, sweet-smelling place.
We are experiencing spring in the Council and I am thrilled to report the affiliation of two new support groups in Queensland. RO HARRÉ's group in Cairns has been slowly gaining momentum since its inception 18 months ago and KEVIN SHORROCK's group in Brisbane is just in its infancy. With the help of his co-founder ALF REARDON and the Council I hope the Brisbane support Group grows steadily.
We have again secured generous sponsorship from CSL LIMITED ($850 for 1999/2000) for the continuation of the Council for which I am most grateful. Consequently we can run our four Conferlink meetings per year and publish our newsletter "INvoice".
For this issue our editor JAMES GERRAND and excellent assistant wife BETTY GERRAND have very interesting articles which have come from hard work by State Support Group members to increase awareness of GBS and CIDP. Although June 1st is our official Awareness Day this important work is ongoing,
It seems the awareness of GBS & CIDP is gaining and even government Ministers are responding to our requests. Thankfully the lobbying that has been done will see an end to the shortages of Intragam and an upgrade of gammaglobulin treatment for CIDP and GBS into Category A in the near future.
I personally was revitalised with motivation after our Conferlink meeting last Sunday and look forward to seeing many articles in various magazines furthering our cause.
May I call on all support group members to keep up the good work. As has happened to the Council, if the work is put in steadily, the rewards will be reaped in due course.
Let's cross into the next millennium with enthusiasm and commitment.
BARBARA BURZAK-STEFANOWSKI, President.
Our Secretary, MELVA BEHR, was featured as the reference for more information on Guillain-Barré in an article in the August issue of the Australian Women's Weekly.
As a result Melva received more than a dozen enquiries from all over Australia with some joining their local GBS support groups.
The article is reprinted on the back of The IN Group posting wrapper.
The Inflammatory Neuropathy Support Group of Victoria Inc. (The IN Group) on the 18th May donated a further $5,500 to the Royal Children's Hospital Research Fund for research into GBS and CIDP being carried out by Dr ANDREW KORNBERG. The sum included $2,500 donated by family and friends of the late JENNY HEFFERNAN. A total of $17,500 has now been donated by The IN Group over the past three years, thanks to the generosity and fund-raising activities of many of our members, families and friends.
Four years ago Robyn Gobert of Malanda started the Far North Queensland group of GBS & CIDP. With a small but active core group, we have a membership of over one hundred people who are as far afield as Tasmania, New Zealand and Darwin. There is also a sub-group centred in Bundaberg and a new group starting out in Brisbane. We produce a Quarterly Newsletter that is available on request.
We aim to promote the Group's activities by keeping local GPs and nurses aware of our existence and informed of our activities. To that end, we send copies of our newsletter to local acute wards and have had articles in this area's GP magazine.
Recently we applied for and received a grant from the Queensland Gaming Machine Community Benefit Fund to purchase two electronic beds for hospitals in Mossman and Atherton.
Last year one of the Cairns Rotary Groups put on a fund-raising Movie night for us and we rely heavily on the generosity of members to produce our magazine.
We have the support of local newspapers and have received good coverage and therefore free advertising!
Our region is large and our membership very scattered. We do not have the concentration of folks in one place, as do the larger cities. We visit new sufferers in hospital and at home and give support to their families.
We have a quarterly business/social meeting that is open to all and would like to extend a welcome to anyone from interstate that is passing through Cairns.
RO HARRÉ, Secretary
Numb Toes and Aching Soles - Coping With Peripheral Neuropathy by JOHN A. SENNEFF. MedPress San Antonio, Texas USA. 1999. 300pp. pbk US$19.95 plus US$6 postage.
Review by James Gerrand
The author deals with peripheral neuropathy (PN) from the patient's perspective. He has gathered scientifically accurate information to help patients understand their symptoms and treatment options. A main emphasis is in coping with pain from PN.
In a Foreword, Dr Wolfe states that PN has a prevalence of 3-4% and is especially common in middle and late adulthood. About half of the cases relate to complications from diabetes mellitus. About 10-25% remain unexplained.
Patients with the rare GBS and CIDP disorders, though only comprising a small proportion, prevalence of 0.2%?, of those with PN, will find the information helpful. The author does list CIDP and GBS and briefly discusses procedures for their diagnosis (EMG and lumbar puncture) and treatments (plasmapheresis, IVIG, immunosuppressants - Imuran, prednisone, cyclophosphamide).
The author's main emphasis on coping with pain begins with a chapter dealing with its physical and psychological basis. Then follows chapters on pain medications, other medical therapies, alternative treatments, nutrients, experimental drugs and special considerations for diabetes and HIV (he mentions that CIDP may affect AIDS/HIV victims).
He finally gives a comprehensive round-up about various methods of coping to improve quality of life - use of exercise, ice packs, hydrotherapy, sleep, foods and diet. He discusses the care of feet - shoes, inserts, socks - and of hands. He lists 25 other ways to cope and stresses the need for patience and understanding between patient and caregiver.
Leaving the best to the last, the most valuable part of the book is its listing of comments by patients relating to their treatment. For example he reports the reactions of three patients to plasmapheresis - Jenny is definitely seeing some improvement after 17 treatments; Anon notices a big difference after 4; Cathy reports relief from 12 treatments, 4 per month. There are 8 reports on Imuran and/or prednisone, some favourable, some adverse, some with warning. The 9 comments on IVIG treatment, reported mostly that it helped though some stressed the importance of the period between treatments.
Note. The IN Group is prepared to order this book direct from the Texas bookseller at a cost of $40. Please order from James Gerrand 138B Princess St, KEW VIC 3101 tel 03 9853 6443 or e-mail ingroup@vicnet.net.au
It is pleasing to record that the South East Queensland GBS Support Group and the North Queensland GBS Support Group have joined the Council of GBS/CIDP Support Groups of Australia alongside The Inflammatory Neuropathy Support Group of Victoria Inc. (The IN Group), The Neurological Resource Centre of South Australia, The GBS Association of NSW Inc. and The GBS Support Group of Tasmania.
Secretary MELVA BEHR is following up contacts in Western Australia with the aim of establishing a Support Group there and Victorian Delegate JAMES GERRAND is asking the newspaper "Canberra Times" if it would publish an appeal for anybody in the ACT wishing to help form and be a member of an ACT GBS/CIDP Support Group to k We have hopes that Support to contact Secretary Melva. A Support Group in the ACT would be particularly valuable as a means of close contact with the Federal Government on matters of Council concern.
The Council thanks CSL Limited for its continuing support of the Council. The $850 it donated for 199/2000 will provide for the quarterly Conferlink meetings of the Council and the publishing of two newsletters INvoice.
JOHN STANLEY of the GBS Support Group of Tasmania was active in promoting public awareness of GBS and CIDP through obtaining items in all three Tasmanian newspapers at Devonport (featured above) Hobart and Launceston. Congrats, John.
Correspondence to Secretary, 1 Voumard St STH OAKLEIGH VIC 3167 tel (03) 9570 4251
Members of the Council
The Inflammatory Neuropathy Support Group of Victoria Inc.
138B Princess St KEW VIC 3101 tel 03 9853 6443 fax 03 9853 4150
email ingroup@vicnet.net.au
The GBS Association of NSW Inc.
PO Box 572 EPPING NSW 2710 tel 02 9773 3048
email guillain@ozemail.com.au
The GBS Support Group of North Queensland
42 Lake Placid Rd CAIRNS QLD 4878 tel 07 4039 2667
email placidroja@internetnorth.com.au
The GBS Support Group of South-East Queensland
7 Lamona Court FERNY HILLS QLD 4055 tel 07 3851 1145 fax 07 3851 3744
email b.shorrock@acenet.net.au
The GBS Support Group of Tasmania
PO Box 393 DEVONPORT TAS 7310 tel 03 6427 9133
The Neurological Resource Centre of South Australia Inc.
23a King William Rd UNLEY SA 5061 tel 08 8357 8909 fax 08 8357 8876
email nrc@camtech.net.au
Office Bearers of the Council
President: BARBARA BURZAK-STEFANOWSKI
Vice-President: HEATHER TRENORDEN
Secretary/Treasurer: MELVA BEHR
Delegates to the Council
New South Wales: PETER TREGEAR
North Queensland: RO HARRÉ
South-East Queensland: KEVIN SHORROCK
Tasmania: JOHN STANLEY
Victoria: BETTY GERRAND
JAMES GERRAND
Editor of the newsletter "INvoice": JAMES GERRAND
138B Princess Kew Vic 3101 tel (03)98536443 fax (03)98534150
email: ingroup@vicnet.net.au
Internet Home Pages
Guillain-Barré Syndrome Association of New South Wales Inc.
http://www.ozemail.com.au/~guillain/
Guillain-Barré Syndrome Foundation International
http://www.gbs.org/support/foundations/
Guillain-Barré Syndrome Support Group of the United Kingdom
http://www.users.globalnet.co.uk/~gbs/
The Inflammatory Neuropathy Support Group of Victoria Inc.
http://home.vicnet.net.au/~ingroup/
The Neurological Resource Centre of South Australia
http:/www.span.com.au/nrc/
From the NRC of SA
Video: "Challenges & Choices" by NRC of SA. $35
From Andrew Belotti, 28 Cale St, COMO WA 6152
Book: "Let Your Spirit Run Free"by ANDREW J. BELOTTI. ppbk 150pp $15
From The IN Group
Video: "Climbing to Recovery" by GBS Foundation International $30
Book: Numb Toes and Aching Soles by JOHN A. SENNEFF $40 (see Review p.2)
Booklet: A Road to Recovery A-Z by JUNE CATHCART $6
Boy, is this Guy Sick" by JOHN POLLARD $2
GBS - An Overview for the Layperson" by GBS Foundation International $3
CIDP - A short Guide" by GBS Support Group of the UK. $2