Welcome to our website.
There may be many reasons for you reading this message. However, it is highly likely you, a relative, friend or perhaps a patient has been diagnosed with GBS/CIDP or a related disorder, such as Miller Fisher Syndrome and you are seeking some answers and insight into these rare mysterious disorders.
Hopefully, this website and the GBS Association of NSW can ease your concerns and support you along the road to recovery.
For many erstwhile healthy individuals and their relatives and friends it comes as a huge shock to realise they have been randomly selected by nature to be afflicted by one of these rare disorders and often within a short space of time, sometimes only hours for some, have gone from a walking and talking ‘normal’ person, partner, parent, friend or relative to being a patient, perhaps in intensive care, totally immobilised, can only communicate with eye blinks, breathing through a respirator and your doctors cannot tell you why you have acquired this funny sounding syndrome. Further, they may be treating you with plasmapheresis, IVIG and other exceedingly expensive and complex treatments, that may or may not work.
You will note I often refer to ‘our’ website. The GBS Association of NSW Inc. is a collective of members who have been in some way either directly or indirectly impacted by GBS/CIDP or a related disorder. Many have experienced firsthand what it is like to be lying in that bed, not being able to move or communicate with loved ones and basically being trapped in a body that was working OK a short period of time before ‘something’ happened to put you in hospital. Yes, it is a shock and a traumatic time for all, not just the patient. However, we have members and friends who have fully recovered in some instances, some have residual impairments, some, especially CIDP members have ongoing impairments, strange sensations, pain etc.
There is much we do not know about GBS and CIDP. However, we do know, in the vast majority of instances you will survive and go on to lead a good life. There is a very small mortality rate but mostly there are other health and age complications involved. When I say good life, it will perhaps not be the life you envisaged prior to your diagnosis but, many sufferers find another path, many return to work, have careers, families, travel etc. and adapt to whatever impairments they may have acquired.
We know the shock and trauma of GBS/CIDP can be great and our members recognise from their own experience, newly diagnosed patients need to know there is a road to recovery, which many have traveled before them. They know how difficult it can be but also how reassuring it can be to talk with someone who has been there and come through the other side as it were. We know the indignity of asking others to help you get up from a chair, bath, get dressed and perhaps feed yourself because your fingers and hands are weak or won’t respond properly. We know how hard it can be to explain that you have buzzing feelings in your arms or legs, or it feels like ants walking on or under your skin or strange random pain sensations. What it is like to feel freezing cold on a warm day or having to walk next to the wall because your balance is not quite right. We know if you try to explain these strange sensations to most ‘normal’ people they will not know how to respond. However, talk with GBS Association members and chances are they will nod and say me too!
The GBS Association of NSW is staffed by volunteers, some relatively newly diagnosed and some who have lived for many decades with GBS/CIDP. A great font of experience and this website is one of the key means by which we can help support those similarly impacted. This website, our newsletter, telephone and email support are all maintained by volunteers and fully funded by membership and donations and where we can, also provide support into research.
You will find many stories within this site both from the patient and some partner/relative perspectives. Not one says it is an easy road to recovery but with knowledge and support, some of which you will find in this site, your journey to recovery will be less traumatic.
It is my fervent hope you find some answers to your questions within this site. If not please do not hesitate to contact us via telephone or email. Better yet do this and also consider coming to one of our meetings to listen to other members and/or tell your own story. Further, we also have a newsletter called Recovery published quarterly. Our Editor is always seeking content. Your story is welcome and a valuable resource on our collective journey to unraveling the mysteries of GBS/CIDP.
Thank you for visiting our website and any feedback is welcome.
Congratulations on taking another step on the road to recovery.
Kind Regards Mark.