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.
On Saturday 22nd February 2020 it is World Encephalitis Day, and I will be taking part in a “Brain Walk” to raise funds for The Encephalitis Society and to raise awareness of the illness. I will do a lap around the River Severn starting from the Diglis Walkway bridge, around the river and ending up back at the bridge. Between now and then I will also be counting all the steps I do every day on The Encephalitis Socity’s “Brain Walk” app –
Please consider supporting me and The Encephalitis Society as I take part in this “Brain Walk” for World Encephalitis Day on 22 February – every penny makes a huge difference to awareness and research of this extremely rare condition. The link to donate is here – https://www.justgiving.com/fundraising/lisa-ventura.
Thank you all so much!