National Epilepsy Awareness Day is Saturday, March 26. The condition is one of the most common neurological conditions, yet one of the most underfunded
Ahead of National Epilepsy Awareness Day, a Plymouth woman has told of the harrowing incident that nearly led to her death. Caroline Williams, originally from Hull in Yorkshire, set up the Plymouth Epilepsy Group in 2018 so she could help spread awareness of the condition and the impact it can have on people’s physical and mental state. That was a key milestone in a long journey for Caroline, when she was finally able to come to terms with and feel confident enough to speak about her own experience.
She used to feel ashamed about her epilepsy having suffered absent seizures as a child which, after seeming to disappear, returned as Tonic Clonic seizures in her 20s: epilepsy in its purest form. This was something she hid from her colleagues but her near-death experience has pushed her to lead from the front on epilepsy awareness. “They happened very rarely but in my head it didn’t exist,” said Caroline. “I spent a lot of my time ignoring it because they only happened through things like stress, lack of sleep or alcohol. “It might only have happened once a year but I was angry and struggled to accept it.”
Caroline still felt positive about many aspects of her life. She was once a lecturer and nutrition and well-being in sports science. In 2016, she had a new job on the horizon and had gone two years without a seizure. However, all that changed very dramatically. “I had probably one of the worst attacks of my life,” she said. “This was the first time that my partner had seen me have a seizure. “I had another quickly after, and in the space of about 12 hours I had had four. “At that point I was at risk of having a stroke or dying.”
Caroline felt as if her independence had been swept away. Losing her driver’s license was a blow, but nothing in comparison to the level of anxiety and shame that came with it. She even let colleagues come to their own conclusions about why she had lost her license, rather than tell them about her condition.
As that November is Epilepsy Awareness Month, in November of 2018, Caroline decided to post on Facebook every day for 30 days about what it’s like to have epilepsy. This was the first time she opened up about having the condition.
The group was formed with the intention of spreading awareness of epilepsy, how it can impact people physically as well as mentally, but was also designed to be a support mechanism for those with the condition to talk to people who have experienced similar things.
As far neurological conditions go, epilepsy is the most common, yet the most under-funded in Britain. Dementia and Parkinson’s see a larger share of Government money dedicated to their respective research whereas funds attributed to epilepsy total just 0.3% of the overall purse, which sits in the region of £5bn.
Statistics show £82.5m for dementia (£97 for each of the 850,000 with dementia), £34m for Parkinson’s disease (£234 for each of the 145,000 with Parkinson’s disease) and £12.8m for epilepsy (just £21 for each of the 600,000 with epilepsy). Due to a lack of research in comparison, Caroline believes the actual number of people in the UK living with the condition will be much larger than statistics suggest. She said: “If you look at countries like Australia and America, the research is there, they believe the actual number of people diagnosed is around one in 26.
“It is something that is so difficult to diagnose properly, it also means it is very easily misdiagnosed. This is why we want to raise awareness about it.”
For Paul Salter, he felt much of the same feelings following his diagnosis around 10 years ago and now has a big influence on the group after making contact with Caroline through Facebook. Much of the money that the group raises is spent on doing activities, like surfing, one of Caroline’s favorite past times while fishing is Paul’s passion.
He said: “March 26 is national epilepsy awareness day. “It’s the day to try and make everyone aware of the condition.
“I love my fishing and epilepsy has affected that greatly, but this year we’re having an event in Tavistock, at Milemead Fishery. “It will be an event where you can come along and talk to other people about epilepsy or just get advice. “It’s our day to get the word out. We have a big raffle and proceeds from that will allow us to host more meetings and plan more activities.”
According to epilepsy research, the condition affects one in 100 people in the UK. Around the same number of people are diagnosed with it every year. Our brain cells are in constant communication with each other and send chemicals back and forth, when this happens it creates electricity. A seizure occurs when there is a sudden burst of that electricity which causes a range of new sensations for the recipient.
There are around 60 different types of seizure and someone may have more than one type. Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness. These are known as Tonic Clonic seizures
The consequences of an epilepsy diagnosis of course can vary from person to person and can be wide-ranging. The effects on the body after having a seizure is likened to the effects of running a marathon and ‘like lightening’ could occur at any time. Anxiety and unfortunately suicide rates are high among epilepsy sufferers.
SOURCE: plymouthherald.co.uk, Nino Robertson