Yesterday saw the launch of a new call to action report ‘Time to DeLiver: Getting a Grip on HE’ at the European Parliament in Brussels. This is the first report from Europe to highlight the significant burden of hepatic encephalopathy on patients, their carers, families and society. The event was hosted by UK MEP Anneliese Dodds.
Please see the British Liver Trust website News page here britishlivertrust.org.uk/la... for a new report for the full report.
I haven't read it yet but 'Hooray' about time ❤️❤️❤️
Hepatic Encepathalopy or H.E.
This ‘Time to DeLiver: Getting a Grip on HE’ is a superb initiative.
I was honoured (with my wife) to attend the launch at the European Parliment in Brussels last Monday. We were there representing the patients experience, (I was diagnosed with "Chronic" H.E.) and had some really hair raising experiences, the high light being taken to court by my local hospital for causing a breach of the peace (they mistook my behaviour for that of a drunk person)
The ELPA (European Liver Patients Association) with this iniatiative are hoping to start a general and specifically improved medical awareness of this condition that an estimated 200,000 people suffer from in Europe, and very probably many times more as the condition is so underdiagnosed.
In its extreme form H.E. can ruin lives, relationships, putting unimaginable stress on sufferers and carers who are already in an exceedingly stressed situation.
If anyone reading this has issues with H.E. or is a carer for someone suffering from H.E. and are finding the situation impossible to manage, please feel free to contact me in case I can offer advice or just be a shoulder.....
britishlivertrust.org.uk/la...
Thank you so much for your post and your involvement and support, we wish you well with your future treatment. Audrey, BLT
Nice one PCBnPBC
HE is a nasty condition that's for sure. I managed to write off my wife's car due to it. OK I shouldn't have been behind the wheel, but that's the problem with HE you don't realise that you are mentally incompetent until it's too late. Fortunately there were no other vehicles involved, and I was not seriously hurt and alone in the car. This sort of thing should be a lesson to every one who has advanced liver disease. Do Not Drive OR Operate Heavy Machinery. On the plus side my wife had been wanting a new car for a while now she's got one!
Good luck to all.
just seen your reply / post Boab11
sounds about right! I nearly ran into a car on my journey to consultants meeting when he said you are not driving home! (HE) and I have a photo that I treasure that shows my welly boot with a 4cm cut on the toe from my Chainsaw! the boot is still waterproof, but another inch and the blade would have had my foot / toes... stopped using that after this incident! managed to turn my lawn tractor over, nearly crushed me, and fell down a 10 foot drop (twice) ..... cant tell you the number of people I upset, quite amusing (for me) looking back at it....not so amusing for my 2 late teenage daughters, mind you dads are meant to be an embarrasment! I took it to another level for them..
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