As I am constantly updating this web site. For the latest update, please click on the button to the right:
Why have I created this site?
I am a sufferer from CIDP, that is now trying to get information to help anyone else who is unfortunate enough to be struck down with this, GBS or their many variants.
My journey from the initial symptoms, the actual illness, how it was finally diagnosed and my slow recovery are detailed in these pages.
As there appeared to be a myriad of conflicting and difficult to decipher information available, I decided to run a Web Survey in 2012 to see how other sufferers had dealt or were coping with the illnesses of GBS/CIDP. The survey has now closed, as I ran it for a year (until March 2013) and the final results are published on this web site.
This web site is my personal interpretation, based on my experiences and information gained in trying to understand the disease, it's symptoms, causes and impact on my life. The aim is to help others and get the message and information out there. The contents may not be applicable to all readers, I just hope it is informative and helps - in which case I have achieved my goal.
I have spent many hours trawling the web and articles to try and provide accurate yet understandable information. Thus I have interpreted some scientific jargon as best as I can, so sorry to any professionals who may find my version of medical terminology imprecise or inaccurate. My advice to you: "Use smaller words".
Where to start….. (this is far more difficult than it should be).
Within this web site, I will attempt to put things in to a rough chronological order, from the start in January 2011 to the end of 2013 and hopefully beyond, but due to the time lapse between events and me writing this (commenced February 2012) they may not be 100% accurate. The reason for the delay was mainly due to my spending all my time recovering initially and not realising the potential benefit to others of documenting my journey.
I am male, 51 years old, 186cm tall (just over 6’ 1”) and weigh around 69Kg (11st) – at the time of writing/starting this (Feb 2012). Pre-CIDP I was not un-fit, have never smoked, drank a little and exercised similarly, When younger I used to be fairly active and this comes up in one part of the survey results. Other historical influences will become clear during this narrative. Before any of this occurred my weight was around 83Kg (just over 13st).
One massive thank you I must say is to my wife, 20 year old daughter, 17 year old son and my mother-in-law, whom without their assistance I would never have got to where I am now (never mind their patience and persistence!).
One vital insight, it may be bad enough being the sufferer of this type of condition, spare a massive thought for the loved ones who have to sit by and watch (if you are lucky enough to have someone)!
The original Blog and posts are still available: @ http://mycidp.blogspot.com