On 8th January 2020, after being misdiagnosed with motor neurone disease and associated dementia, my Dad was finally diagnosed with a very rare brain disease called CASPR-2 antibody encephalitis. He became ill in October 2017 when he had seizures out of the blue, and since then he has declined massively in terms of his mobility, memory, cognitive functioning and day to day living. It can be treated, and while he may not get back to how he was there is a glimmer of hope that he may improve with auto immune therapy treatment, rehabilitation and time.
Until 8 January 2020 I had never heard of the word encephalitis but thanks to everyone at The Encephalitis Society I gained a huge understanding of my Dad's condition, of how rare it is and what his prognosis for the future is. In 2020 I shall be supporting them through fund raising and awareness raising campaigns, as well as sharing my Dad's story in the hope that it leads to greater awareness and greater understanding about his illness.
The Encephalitis Society have been SO helpful since my Dad's shock diagnosis of CASPR2-antibody encephalitis, and with helping me get Dad in front of Professor Sarosh Irani at the John Radcliffe Hospital in Oxford, who first discovered CASPR2-antibody encephalitis. We are going to see Professor Irani next Friday, 28 February, and my Dad will be in excellent hands with him.
I planned to do a #BrainWalk around the River Severn for #WorldEncephalitisDay, but due to severe flooding I had to postpone it until Saturday 7 March 2020. I've therefore decided to do something better to keep the awareness going and to hopefully raise a small bit of money for The Encephalitis Society charity.
Please consider supporting me and The Encephalitis Society as I undertake this challenge - every penny makes a huge difference to awareness and research of this extremely rare condition. Thank you all so much xx