The PN Awareness and Recognition Campaign

From Neurology Ward to the Northern Lights, and back. I need your help, and so do those affected by Peripheral Neuropathy (PN).

Hello, my name's Andy Keen, thank you for finding the time to read my story.

When I was 21 years of age I woke up one morning to find myself paralysed. I couldn't move my arms, legs, hands or feet - everything was totally rigid, all I could do was lie there on the bed like a corpse. As you may imagine this was an extremely frightening experience, not to mention a frustrating one, as up to that point I'd always been an active, healthy and confident individual.

My brain must have been functioning normally that fateful morning as I clearly remember saying to myself "feet, move" etc., but absolutely nothing happened - the signals were simply not getting through. Eventually my Mother came to my room wondering why I wasn't up an about early as per usual. It must have come as a huge shock to find me there in such a state. My Mum's a registered general nurse, however, and, she immediately launched herself into professional mode. Before I knew it I was in the back of an ambulance, and being transported at breakneck speed to the local hospital.

I was admitted onto a Cardiology ward where I spent several weeks undergoing tests, mostly routine ones from what I remember - blood, urine etc Eventually I was told that the cause of this sudden onset paralysis was an "unknown virus", and I was subsequently discharged from their care. It took me almost a year to learn to walk again, and a great deal longer to regain my self confidence. Eventually, I made a full recovery and my life returned to normality.

Four years later I was visiting my parents home in Congleton in Cheshire when right out of the blue the mystery illness struck again. I was in the garden and all of a sudden, and without warning, my legs gave way and I collapsed into a heap on the ground. My Father bundled me into the car and took me over to the North Staffordshire Royal Infirmary in Stoke-on-Trent. I was rushed through A&E and thankfully a young junior doctor was on duty who must have been extremely clued up as she immediately recognised that I was possibly suffering from a neurological disease called Guillain Barre Syndrome (GBS). It's a very serious illness, which can be fatal if appropriate treatment is not prescribed soon enough, and therefore I was admitted straight onto the neurology ward, ward 23. Whilst there, I was placed in the hands of an extremely caring and knowledgeable neurologist by the name of Dr. Simon Ellis. The very first thing that he said to me was "Andrew, I can assure you that this is not in your mind, I will do my very best to help you and you can rest assured that I shall remain tenacious in my search for answers". I can't begin to tell you how comforting and re-assuring it was to hear such words at the time because prior to that the previous hospital had pretty much labelled me, fobbed me off and, worse still, had the audacity to suggest that the condition may possibly "psychosomatic" which, as history would soon reveal, would transpire to be a terrible blunder on their part.

After Dr Ellis and his team had conducted the full neurological workup (CT Scan, MRI scan, nerve conduction studies, nerve biopsy, lumbar puncture etc.) he informed me that I was suffering from something called peripheral neuropathy, or PN for short. It basically meant that my nerves weren’t working properly. He couldn't tell me what the underlying cause of the problem but, true to his word, he did remain tenacious in his search for answers. Eventually, after several years of investigation, it was concluded that the root cause of my illness was autoimmune mediated, i.e. instead of protecting me, my autoimmune system was basically doing the exact opposite and was effectively causing an own goal. The actual diagnosis I received at the time was 
Autoimmune Vasculitic Mononeuritis Multiplex. As if the disease and reduced mobility wasn't enough to cope with - I now how to learn how to pronounce this :) I can smile now, as I'm still here, thanks largely to Dr. Ellis and, to some extent, my own positive mental attitude and determination.

The problem from that point onward is that because there there is no defined underlying cause, there is no definitive treatment or indeed prognosis. All the doctors are able to do is to try to manage the symptoms (mainly pain and sleep deprivation in my case) and of course refer you to other specialists such as physiotherapists etc. I was actually issued with a wheel chair, but refused to get in it. I used to drag myself along the hospital corridor floors, or catch a ride on the back of someone else’s wheelchair - and, in my naivety and lack of understanding regarding the complexities and nature of neurological diseases  at the time - try to motivate the individual in question to get out of it. I must have been a real pain in the backside on the ward at times, but I simply didn't want to give up without a fight. I guess looking back on it that this was my way of coping with my own illness - trying to help others.

One day Dr. Ellis walked over to my hospital bed and he said "would you like to meet someone who has something similar to you?". I jumped at the opportunity of course, as at least I'd get the opportunity to speak to someone who could relate to what I was going though - and vice-versa of course. The gentleman's name was Gerry, and I shall never forget him. Needless to say, we became close friends and confidants, which meant the absolute world to me, especially as ALL of my so called friends in the outside world were nowhere to be seen - they'd basically scarpered because they couldn't handle seeing me in such a state. Several months later Gerry sadly passed away, which hit me like a runaway train. Not just because I'd lost a good friend but also because I thought that given the fact that he had something very similar to myself that my time to meet my maker was coming soon too. Firstly I hit rock bottom and had really stupid thoughts in my head, which I won't get into here, and then I remember looking around the ward thinking my God, there's everything here on the walls apart from the thing that I've got - Epilepsy, Parkinson's Disease, Muscular Dystrophy, Motor Neurone etc. I decided at that very moment that if I was going to cop it, as they say, then I was going to leave something positive behind so that anyone else who found themselves in a similar situation would have something to refer to, and hopefully gain comfort from. I also wanted my son Alexander, who was only a couple of years old at the time, to grow up knowing that his Father had done something positive before he passed away, and not simply sat there feeling sorry for himself. So, I started to do research (lots of it) and then I put pen to paper and started writing. Eventually, I'd compiled a booklet on the subject of Peripheral Neuropathy, which I called "Peripheral Neuropathy - Under the Spotlight". The problem now was that although I'd written it and had it endorsed by a number of key opinion leaders in numerous medical fields, I had no money to get it published. I contacted several people including the 
Ford Motor Company who, after 4 hours of discussions, agreed to not only publish it, but also to distribute it to every neurological ward in the Country. (Thank you Karen White - you're yet another kind and caring individual that I shall never forget).

Anyway, to cut a very long story short, I survived, and here I am today. Moreover, I went on to make almost a full recovery, to establish an organisation which helped tens of thousands of people around the globe (The Neuropathy Trust), and over the course of 17 years to raise in excess of £2 million for Charity.

I am here now asking for your help.

Peripheral neuropathy is believed to affect up to 8% of the general population and yet if you were to ask
the average person in the street what PN is could they provide an answer? Would they know that it's peripheral neuropathy (PN)? Would they be aware of the causes of the disorder, possibly over a hundred of them including extremely common ones such as Diabetes Mellitus or the neurotoxic effects of Cancer treatments, for example? If they were to know what PN is then in all likelihood they're either affected by the disorder, like me, they have a friend or family member who's affected, or they have a professional interest in the disease area. If they were to answer 'no' then, without a shadow of doubt, it is definitely in their interest (and possibly yours too) to help me to raise the profile of this highly prevalent disorder, and to help to improve education amongst all major stakeholders, i.e. those directly affected, families, friends and carers, healthcare providers, industry and politicians alike.

I'm not simply looking for crowd funding to get this campaign well and truly off the ground, but also input and support in various formats. I want to hear stories from those affected, I want to hear from people with a special interest in the disease area, I want to hear from movers and shakers in industry and government alike, I want to hear from anybody who has access to media outlets so that we can start to get this story out there and to ensure that it receives the attention that it quite rightly deserve.

And, in appreciation of your help, I'll ensure that you receive something nice back (in the form of a reward) in return. Who knows, depending upon how much you can help me, I may even be able to help you to fulfil a dream, and to tick of a wish list item.

The Project

I am looking to generate at least £5,000 in total. The funds shall be used as follows -

To establish a Community Interest Company, 'The PN Trust' - 
a legal entity that shall provide free support and information to those affected by peripheral neuropathy and neuropathic pain

To help to fund the continued development of the web site, which will form the basis of the freely accessible information and signposting service. My Son, Alexander, and I have already made a start on this. If you'd care to take a look then please visit neuinsight.com (Clicking this link will open up a new window in your browser).

To help us to attend a medical meeting pertaining to the disease area. As a result of attending this meeting I will then be in a position to collect and disseminate information via the web site. This will of course also provide an excellent networking opportunity.

Any additional revenue generated shall help towards the cost of hosting our first meeting, which shall take place in London in 2016. A number of highly respected doctors have already agreed to lend their support by speaking and sharing their knowledge at the meeting.

If I can secure sufficient funding (an estimated extra £5000) then at some point in time - hopefully in the not-to-distant future - then I would also be looking to to organise a syndicated radio broadcast in order to help to get the word out there on a much larger scale, and to continue to be a catalyst for positive change.

Many thanks for your support, and very best wishes to you all.

Andy Keen

PS A few years ago I was interviewed by BBC radio regarding my story. If you'd care to listen to that interview it's on youtube and can be accessed by following this link - https://www.youtube.com/watch?v=XeqBx3RxiS4

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