PURPLE DAY: Wiltshire teacher hopes for more education on "invisible" condition
It affects almost 1 in every 100 people in the UK
A teacher from Wiltshire that suffers from epilepsy says raising awareness about the condition will help dispel the myths around it's affects.
Claire Johnson was diagnosed when she was 10 years old and has been trying to control it ever since by taking medication.
She's speaking out about it as today (Friday 26th March) is 'Purple Day', which is dedicated to raising awareness of epilepsy around the world.
When Claire was first told she had the condition in the 1970s, knowledge around it was quite limited.
She said:
"I was first diagnosed at about ten years old following my first tonic-clonic seizure, although I had unrecognised seizures up until then. After my teens these were controlled. I am photosensitive, but now realise (through Epilepsy Action info) that my triggers are varied, inc. sleep, stress etc. I continue to have absences, myoclonic seizures etc. but hardly suffer from these at all in recent years due to a better understanding of my own condition / medication."
Claire says that she has only started to fully understand it in the last 15 years or so but as it's an "invisible" disease, it's difficult for other people to understand it's affects.
MAJORITY OF BRITS BELIEVE SUFFERERS "NEED TO BE MORE POSITIVE"
Around 87 people are diagnosed with epilepsy in the UK every day, while most commonly known to cause seizures, the condition is often misunderstood.
Research by charity Epilepsy Action shows that 68% of Brits believe that those with health conditions simply need to be more positive.
Meanwhile 21% incorrectly believe that once people get on the right medication, their epilepsy is pretty much cured.
Commonly, it is linked with flashing lights, however photosensitivity affects just 3% of those with the condition.
There is also more issues beyond seizures caused epilepsy, which include:
- Medicine side effects
- Mental health impacts
- Memory problems
- Absences
Some of these also mean that parts of "normal" life are restricted, such as driving and drinking alcohol.
Claire told Greatest Hits Radio that learning about the condition helped her control it:
"Not everyone with epilepsy has links to photosensitivity as a trigger, it is more but it's not just flashing lights and lots of people presume that's the classic thing, it doesn't affect all people with the condition at all and it isn't just lights, I find it very difficult to be on escalator stairs because of the lines like through venetian blinds like through fences, in cars can really be an issue so that's many things that can cause problems for people with epilepsy.
I think Purple Day is so important because although there's many many valid conditions and fundraising causes particularly in this global environment we have, I would say that the big problem that has always existed with epilepsy is that it has a certain stigma, my parents told me not to tell anybody that I had it, through care I'm sure but they felt that I would suffer if people knew in some way. I think people have a sort of nervousness about the condition, research has shown that people are nervous about what to do if something happens or how to support people or maybe just don't understand in full the implications so that issue that 1 in 100 people will have it and that's one child in every average primary school that may quite often be not diagnosed yet.
For me I do think that getting information about it, even though I had that control anyway with medication, helped me understand that there are other triggers like stress which I'd never considered was affecting my epilepsy, sleep patterns, when I eat all these things that perhaps I hadn't really thought of because I had been told it was to do with lights I should bear in mind. I also think learning about it made me feel much stronger talking to people about it because I thought that it's going to be really important that people are aware because some day they may question why their child, friend or family is doing a certain thing and perhaps they'll get it checked out."
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MORE EDUCATION NEEDED
As the condition can affected different people in many different ways, Claire is backing calls for children to be made aware of epilepsy at school.
She added:
"I think we have got really good as teaching professionals at raising awareness of things like asthma and diabetes and handling those within the classroom and certainly in primary classrooms, little children will be very aware of 'I'll go with my friend at lunchtime because they have to go and have their insulin jab or whatever this is a common place and we all accept our different conditions but I don't think we're quite there yet with epilepsy."
You can find out more about epilepsy and it's affects by going to the Epilepsy Action website.