Today Friday 26th March is the Global Day for raising awareness of Epilepsy; a day when people are encouraged to wear purple. In Scotland alone there are over 55,000 people living with epilepsy, with 42% of them wanting to make people realise that epilepsy is much more than seizures.
As a Family it was four years past that we were alerted to the possibility of of our eldest daughter Naomi having epilepsy. Naomi was 23 years old when on a routine veterinary vacination to one of her horses she fainted; or at least that would have been our obvious thought, but in the words of the vet she hit the ground face first in an action which looked like the felling of a tree. The Vet who had knowledge of epilepsy said we needed to get Naomi seen to as a matter of priority and an urgent appointment was made with the Doctor. The Vet who was very generous with their time spoke with our Doctor and a train of events was quickly put into place.
Living in Orkney we are well used to our travel to Aberdeen for hospital treatment and assessments and on Naomi’s first visit which was for an MRI scan the Consultant managed to arrange for an EEG to save additional travel from Orkney. The MRI or Magnetic Resonance Imaging is the diagnostic tool which will identify any structural change in the brain which may cause the seizures associated with Epilepsy. The EEG or Electroenc ephalogram records the activity in the brain through small sensors or electrodes which are placed all over the scalp with wires attached which are connected to the EEG machine which in turn records your brain wave patterns.
Naomi did not have Epilepsy but we shall always be extremly grateful for the Vet’s knowledge that led to Naomi being treated so very quickly.
I tell you this family story because like a great many others our knowledge of Epilepsy really only amounted to knowing about seizures which is in fact what today’s of action is hoping to redress.
When Epilepsy Action surveyed almost 1000 people affected by epilepsy they were asked for the one thing they wished the public knew about the condition. This was when the 42% of those surveyed in Scotland said they wished people knew that the impact of living with epilepsy goes far beyond seizures. Side-effects of medication, memory problems and impacted mental health are just some of the things that can affect people. A quarter (24%) of people said their biggest wish was for better awareness of the many different seizure types. Other hopes included more understanding that not all seizures are triggered by flashing lights and that epilepsy is a fluctuating condition.
However, new figures suggest much of the general public remains unaware of the ripple effect of the condition and are dismissive of how it affects people long-term. One in four people (23%) thought that epilepsy has no impact on a person’s life, aside from having seizures. A third said that the condition does not impact on a person’s mental health. In one revealing statement, two thirds agreed with the suggestion that people ‘just need to be more positive when living with health conditions’. Yet, with a similar number of people (68%) saying they would be afraid to even witness someone having a seizure, the charity says this exposes a stark disconnect in understanding and compassion towards people with the condition.
Louise Cousins, director of external affairs at Epilepsy Action, said: “These new insights are stark but not surprising. The impact of living with epilepsy can take a huge toll on people’s lives, their happiness and wellbeing. Everyone’s experience of epilepsy is different, but it can’t be overcome just by ‘being more positive’. This attitude needs to change. Lack of knowledge and empathy feeds into fearful, harmful assumptions and people with epilepsy feeling further misunderstood and dismissed. By giving them a voice and encouraging conversations on Purple Day, we can really improve society’s knowledge and compassion and close the gap on this chasm of understanding.”
Yorkshire comedian Maisie Adam was diagnosed with epilepsy when she was 14. She is backing the campaign. “It’s totally normal for people to have those misconceptions about epilepsy, because of the information that’s out there at the moment. So much is frustratingly simplified, Hollywood-ified, it’s very bite-sized. It’s just the understanding that’s important and I think that comes from both sides. It’s about us being understanding of why people have those misconceptions but just hoping that people don’t assume. That they can hold back on any assumptions until the facts have been given. Epilepsy is so different for every single person. Be open to that huge variation. You’ll have your misconceptions, but don’t assume.”
The charity is also urging supporters to take part in virtual fundraisers and to celebrate by using #purpleday on social media.
Support and information for anyone affected by epilepsy are available at epilepsy.org.uk or by calling the Epilepsy Action helpline on 0808 800 5050. To support Epilepsy Action’s Purple Day appeal and help people affected by epilepsy, visit epilepsy.org.uk/purple
When I was a child our family used to attend a local church. There was a man who came to church, always sat in the same seat near to the door, and wore a crash helmet. I wondered why, and asked my parents. Mum carefully explained that he had epilepsy, and that he didn’t know when he might fall down, and could hurt his head. So, he wore a crash helmet, and sat near the door for in case he needed to be helped out. She then explained epilepsy – as best she could as a non-medical person to a small child!
This was in the early 1960’s – the condition probably wasn’t as effectively medicated as it is now.
I was fortunate to have parents who would explain things – epilepsy or other things which I questioned them about. I think it helped me to grow up with an acceptance of difference.