Catherine Jessop found out about Encephalitis the hard way. Her husband Alan collapsed with a seizure on Boxing Day, which led to a year in hospital and a permanent brain injury.
On a very fast learning curve about how to cope with her husband’s illness, Catherine realised she should use her new-found knowledge to help others in a similar situation. She wrote a handbook Pulling Through, which she launched at this year’s Chiswick Book Festival and on the strength of that she was invited to record this year’s Boxing Day charity appeal on BBC Radio 4.
“We are very pleased to have been invited to do the Boxing Day appeal” Catherine told The Chiswick Calendar.
“The most important thing for the Encephalitis Society is getting the illness recognised.”
Image above: Alan and Catherine with copies of Pulling Through
Most people do not know what Encephalitis is. Surveys show 78% people have not heard of it.
“Sometimes it takes months to get a diagnosis” said Catherine. Because there are only 6,000 cases a year it is quite rare and it is not the first thing that GPs necessarily think of when presented with the symptoms.
The main symptom is seizures, which are easy to mistake for epilepsy, a stroke or a heart attack.
“We were lucky to be living in London. Alan went to Charing Cross where they diagnosed it relatively quickly.”
The other symptom people are likely to display is confusion.
“Confusion is almost too gentle a word. People are rambling and incoherent, talking nonsense. The doctors asked me whether Alan took recreational drugs, because the way it comes across is very like someone who smokes a lot of pot.”
Image above: Catherine introducing her book at the Chiswick Book Festival
The type of Encephalitis Alan has is Autoimmune Encephalitis, which is is the body’s immune system attacking itself. In about 50% of these cases it happens because the immune system has detected the early signs of cancer. Alan has regular tests but thankfully has not developed cancer.
Encephalitis can be treated with drugs which zap the antibodies attacking the brain but after the illness is cured, patients are still left with a brain injury, the effects of which are hard to understand and get used to.
“I was incredibly honoured to be asked to represent the Encephalitis Society on the prestigious BBC Radio 4 charity appeal,” said Catherine.
“To be featured on Boxing Day is extremely poignant for me and my family as it will be five years exactly to the day (in fact almost to the minute) that Alan first became ill.”
The broadcast will be at 7.54am, repeated at 9.25pm and repeated again the following Thursday.
“Raising awareness of this terrible illness is a vital part of both getting an early diagnosis and appropriate treatment. Millions of people listen to Radio 4, so I am thrilled to be able to help spread the word in this way and really hope that the appeal will raise much needed funds for the Encephalitis Society!
“I really want to get across to the listeners just how devastating the impact of encephalitis can be, not just for the person who gets it, but also for their family and friends” said Catherine.
You can donate to the Encephalitis Society through their website: encephalitis.info
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