Message from the chair.
As the newly elected Chair of the Guillain Barre Syndrome Association of NSW I thought it might be appropriate to write an inspirational article for the GBS Newsletter. However, upon reflection is there a need?
Every sufferer, partner, parent, family member I meet provide inspiration to me. Each has their unique story of the sudden impact and ongoing day by day, hour by hour and minute by minute challenges faced and overcome. Every time I read one of their stories it takes me back to the frustration of not being able to feed myself and the indignity of being bathed by a nurse. Yes, even for a red blooded Aussie male! These memories often bring a tear to my eye yet also the realisation that I got through that, I am back to work and getting on with my life as best I can. This inspires me.
Our newsletter is called „Recovery‟ because we know there is a better future which might be measured in the meteoric re-growth of damaged nerves at 1 millimetre per month or the ability to breathe without a ventilator or being able to do day to day tasks like feeding one self, dressing oneself or using the toilet unaided. Hours before the onset of GBS we took these tasks for granted and did them without conscious thought. Hours after the onset we are cast back into the realms of infancy reliant on others for our basic needs. Recovery is about easing that shock and trauma and providing strength and hope.
GBS sufferers are often cast into a medical system that does not readily recognise the onset of GBS, sufferers undergo a myriad of tests, are often misdiagnosed and find themselves going from GP to Hospital and to Specialists before a diagnosis of GBS is established or at least the possibility of a diagnosis.
The sufferer does not understand what is happening to their body that was a short time earlier functioning quite well and then hands and feet, legs and arms do not work properly and do not respond „normally‟. Balance and mobility impaired with strange sensations often like electricity or ants crawling on the skin, the sufferer goes through a gamut of mixed emotions and fear looking to medical professionals who are often struggling to work out what is afflicting their patient. Not to mention the partner, parent, family and friends struggling to understand what is happening to their erstwhile happy healthy friend.
We do not know why GBS chooses some and not others but the sufferers are often faced with life threatening circumstances, sometimes followed by months in intensive care and years of rehabilitation to get back some semblance of their previous life. Some recover remarkably well in a short period of time and others have ongoing issues with mobility and strange sensory sensations. Recovery means different things to different sufferers.
What is even more remarkable is that we have found the majority of partners of sufferers, faced with great unknowns, huge challenges and the potential loss of their sole mate, step up to mark and find a new level to their relationship. This inspires me.
It is fortunate for most they only experience one GBS episode but a few do suffer a second attack and then there are those who suffer ongoing CIDP. These people inspire me.
There is no cure, at present, for GBS/CIDP. There are some very encouraging treatment regimes that have promoted rapid recovery in some cases but, each individual presents differently and the time taken for a correct diagnosis is critical to ameliorate the damage and facilitate recovery. The aggressive treatments sometimes used by specialists such as Dr Stephen Reddel at Concord Hospital and some of the great recovery stories such as Will Hampton, inspire me.
The GBS Association was established more than 20 years ago by a group of sufferers who recognised the health system could only do so much for sufferers who will need ongoing support for years and provide information to all those touched by GBS/CIDP, to create and enhance awareness in the Health system and encourage and promote research into improved treatments and ultimately a cure. People like Mary McAlister who has suffered with GBS for decades and her husband Arthur who have been stalwarts of the Association since inception inspire me.
Membership of the Association is important as GBS is a rare disorder and not well known amongst the general community or medical fraternity. However, Association members have real life experiences and can well empathise with the challenges presented to a person when a doctor first tells them they have GBS. Once the suffer gets past the initial question, “What the……is GBS I have never heard of it?” (Aussie expletives deleted) the Association can assist with first hand knowledge, support, hope and inspiration.
Understanding the symptoms and emotions and informing sufferers they will recover are so important in the initial stages. Then ongoing support from those who have „been there and done that‟ for as long as it takes or for as long as it is needed is why the Association exists.
As GBS/CIDP are rare complex disorders and rarely fatal it is extremely difficult to promote research above more common well known neurological disorders such as MS for example. We have been told a microscope for research might cost $75,000 and funding for research into CIDP and the cost to community could cost in excess of $100,000 for a full time researcher.
Clearly, the funding of research projects are currently beyond the means of the Association and I would encourage members to consider lobbying their local member and ask what funds are being directed towards research into GBS/CIDP and/or to approach person/s of note or „captains‟ of industry and encourage them to adopt a philanthropic approach to GBS/CIDP research.
At present the Association fields calls for assistance from around Australia and often from around the world yet, we are but 50 strong. I would like to take this opportunity to encourage regional and interstate members to consider becoming contacts for new sufferers seeking assistance in their area and/or even establish their own regional support group. Whilst the Association can provide limited support over the telephone or by email there is nothing like personal contact with another sufferer who can really understand what it is like to be told you have GBS and there is a path to recovery with ongoing support from the Association if required.
I would like to encourage EVERYONE in the GBS/CIDP family to come along to an Association meeting. We only have 4 a year in facilities generously provided free of charge by Concord Hospital. Bring a friend or two and make another friend or two. We would like to hear your story in person and/or send in an article for the newsletter. Each story is inspiring, adds to the case history database and brings us a step closer to unravelling GBS/CIDP. At the end of our meetings we have light home made refreshments and snacks where you can sit around and just chat.
In conclusion, whilst GBS/CIDP are life changing disorders I am continually inspired by the resilience of those affected. They give thanks to those who helped them in times of despair and give back by getting on with life as best they can and provide strength and inspiration to those newly afflicted.
Mark Kunach