My name is Jenny and I am the Secretary of the Guillain Barré Syndrome Support Group New Zealand.

We are a relatively new group in that we began in 1997 after my sister Dulcie was diagnosed with GBS. We hadn't a clue what GBS was, how it would affect Dulcie, or what her long-term prognosis was.

Fear plays a major part in any illness with which one is not familiar, and trying to get information was not all that easy. Eventually I put a small paragraph in the 'Help' pages of the Woman's Day, (a local magazine) and the letters started to flow. Within no time at all I had 37 replies, without exception all saying they had been so alone and confused when their illness was diagnosed, and even years later not fully understanding it, or knowing anyone else who had suffered with it, and it was at this point I decided something needed to be done.

Printing and postage was already getting expensive for me so I applied for Lottery funding. To get this, I needed the help of two others so asked Dr Robert Gregory (he is a GBS sufferer and lecturer in psychology at Massey University in Palmerston North), and Terry Watton (also GBS sufferer). They both agreed and we informally got on with it.

Applications for continuing funding were made - we got more and more contacts from sufferers - and today have 342 past or present in our membership. I must add that a proportion of our members has CIDP, and are included in our membership, as are those with Miller Fisher Syndrome.

As time went by, and more and more people contacted us, we decided to form a Registered Charity with a Board of Trustees and were fortunate enough to have Sir William Birch (ex MP and Minister of Finance and also GBS sufferer) consent to being our Patron.

More help arrived when Dr Gareth Parry, Neurologist with Auckland hospital who is specialising in Neuropathies, offered his help to our group.

I got sick in We initially had help from USA with booklets and handbooks, and from UK with their booklets.

With the help of Dr Joel Steinberg, Vice President and member of the Medical Advisory Board of the GBS Foundation International, we were able to print our own handbook and make it available to all sufferers or interested parties.

We do not have a web-site yet, but it is in the pipeline. We have mentions on other websites namely: www.nzhealth.co.nz and www.everybody.co.nz.

Out Trust Board meets annually, and we are at this moment organising our first National GBS meeting, in Wellington during May 2003.

We send out quarterly newsletters and invite our members to contribute stories of their personal experiences with GBS.

The hardest part of all this is getting the hospitals and doctors to acknowledge that we can help. While one or two are great at passing on this knowledge, we still fall far short of the hope that one day, at diagnosis, a sufferer will be instantly told we exist.

We do not offer medical advice as that is the realm of the doctors and neurologists, but do offer support and help where we can. The best offer we can make is to have recovered GBS sufferer visit a recently diagnosed sufferer and answer any questions, and offer the support to sufferer and family during the initial stages of the illness. The feeling of not being alone is very valuable, and of having answers and contacts at the end of a phone or e-mail can be very reassuring.

The initial stages were messy, we floundered a little for a while, but the end result was well worth the effort. So any group out there, such as yours, gets our full support and we wish you all the best.