All about Guillain-Barré Syndrome - Jenny started up the GBS support group in NZ!

It was January 1997 when my sister Dulcie (63 yrs old) complained of tingling in her thumb.

The following day she complained of tingling in her feet, and before the week was up she was in Hospital with a yet undiagnosed condition. Her weakness progressed and her speech became blurred and finally a lumbar puncture was done and the diagnosis of Guillain Barré Syndrome was made.
Shortly thereafter her ability to breathe was compromised and she was put on full life support and airlifted to Waikato Hospital (an hours flight in an Iriquois helicopter) to a high dependency Intensive Care Unit. She was fully ventilated, and her paralysis progressed until just the ability to open and shut one eyelid was all there was.

Having been given the name of her condition, Guillain Barré Syndrome, was a help. At least a positive diagnosis had been made, but that meant nothing to us. A search for information began. I decided to put an article in a National Woman’s magazine called “Woman’s Day” asking for anyone who knew anything of this condition to contact me.

In came the replies. First one or two, then more, and eventually there were 37 of them – all having had, or known someone who has had GBS. A whole lot of information was forthcoming, but there were those who contacted me who had experienced the condition some years ago but still did not understand what had happened to them. They knew the course the illness took, the residual effects etc but did not understand what had caused the condition in the first place. One of those replies mentioned that there was a support group in America so I made some inquiries.

From there I got a lot of information and was able to pass this on to both our own family and to the families of those who had written to me. The support network had begun and I applied for funding from the National Lottery Department. I needed three persons, and a formal group status, in order to get funding so asked Dr Robert Gregory and Mr Terry Watton to help out. They agreed, we got our first lot of funding, and since then it has grown.

Meanwhile, within five months Dulcie was discharged from hospital. Within the next five or six months she was almost back to normal. She still has some residual problems with her feet, and some other very minor nuisance- value residuals, but for the main part is living a normal life, driving her car, holidaying, and has put GBS in the past and got on with her life.

As for the support network, for the first couple of years the structure was a bit ‘loose’ and then the decision was made to form a Trust. One of the persons I had contact with, was a GBS sufferer a few years ago, Sir William Birch (ex Politician) who graciously accepted to be our Patron; Mr Terry Watton took on Presidency; I took on Secretaries position and the very valuable input of Dr Gareth Parry, Neurologist then based in Auckland but now back in the USA was accepted willingly. The Trustees are a mix of ex sufferers of GBS and CIDP and of interested parties (caregivers and academics) who each play a valuable role.

We have had a lot of help along the way to our present situation. We were helped to get our handbook produced by Dr Joel Steinberg (USA), and had information forwarded to us from both GBS International and GBS United Kingdom. Both Estelle Benson and Glennys Sanders have been very valuable in their untiring support, especially in the early days.

Today we have 359 suffers registered with us, and know we have only really scratched the surface of the sufferers here in New Zealand. By far our biggest struggle is to get the hospitals and the medical personel to pass on information about our support group to those newly diagnosed. If we can get in at any early stage and help those families affected, then we know we can offer valuable assistance.

We have organized the first ever New Zealand National Conference on GBS for Anzac weekend 2003 (April 25-27) and had Dr Parry attending from the United States, plus other Neurologists, physiotherapists, and overseas chapter liaisons. The conference was very well attended and was a huge success!

A lot has happened step by step since 1997, and we look forward to further progress in the future. If anyone is reading this and considering setting up a chapter then please do. It is a lot of hard work, but when you see somebody being helped through ‘the mist’ that they are in when a loved one is newly diagnosed, then it is all very worthwhile.

Support is out there from our groups to help you as we were helped, to set up a valuable lifeline to those unfortunate enough to have GBS or CIDP cross their paths.

The easiest option is to sit on our hands and do nothing, but with a little effort and patience, so valuable an organization can be put in place.

Jenny
2003