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Are you clued up on epilepsy?

Are you clued up on epilepsy?

Today and every day, 87 people are diagnosed with epilepsy across the UK. Take a minute and imagine how you might react if this happened to you or someone you care about? Many callers to Epilepsy Scotland's helpline find themselves at the start of a huge learning curve as they and their families adapt to living with this common serious neurological condition.

The whole experience is often made harder because of the general lack of knowledge about epilepsy overall and a lingering social stigma attached to this particular health condition. Our supporters consistently say more needs to be done to educate the public. In raising awareness we help tackle misconceptions, myths and misguided attitudes towards epilepsy.

Epilepsy Awareness

Epilepsy fact and fiction

So, how much do you really know about epilepsy? Perhaps you understand that epilepsy means having repeated seizures. Or you recognise the fact that it affects over 50 million people worldwide, including around 600,000 individuals in the UK and nearly 54,000 here in Scotland. Truthfully, many of us won't be that informed until epilepsy touches our life. Given around one person in 100 will develop epilepsy at any age regardless of gender, social status or race, it's probably a good idea to know what to do to help. Many people use the internet to get a handle on managing the condition, others rely on health professionals for details and advice or they contact support and training agencies to become better informed.

Myths and misunderstandings

The first thing to mention is that no two people's experiences of epilepsy are the same, this condition is as individual as you are. There is no single test for epilepsy and as yet there is no cure. Correctly diagnosing which of over 40 kinds of seizures and epilepsy syndromes someone has and then personalising the treatment is just the start of the journey. The good news is that up to 70% of people can have their seizures controlled with medication. The remainder will sadly continue to have seizures despite taking a combination of different anti-epileptic drugs

Epilepsy affects the brain but it is not a mental health condition nor is it contagious. Recent genetic research is linking particular epilepsies with the mutation of specific genes. It also appears some individuals may have a lower seizure threshold than others. While certain people may be more pre-disposed towards developing epilepsy than the rest of the population, surprisingly the cause of epilepsy is unknown in up to 70% of cases.

Living without stigma

People are sometimes fearful about things they do not understand. Watching someone in a seizure can be frightening so having the confidence to know how to deal well with the situation makes a big difference. Many young people mention they feel embarrassed and judged badly because of their epilepsy. It sets them apart from their peers while behaviour during and after certain types of seizures can mimic someone who looks drunk or on drugs.

The reactions of others can at times be more difficult to deal with than the epilepsy itself. We hear of instances where children and young people with epilepsy are being excluded from sleepovers at a friend's house. We listen to adults who are not invited to social events like weddings or parties because others feel uncomfortable about dealing with their seizures. Sometimes family, or friends, can become over-protective and try to limit what their relative can do with their life in case extra stress, excitement, activity or tiredness leads to a seizure.

Many of us learn about health matters by what we see, hear and talk about. A quick review of how epilepsy is portrayed in movies and on television series is a bit disheartening. Plot lines often feature the condition in a negative way with mad, bad, or dangerous' one- dimensional characters whose stereotypical seizures typically lead to unconsciousness. This influences the public's perception of epilepsy as being dramatic generalised seizures which affect the whole brain rather than partial focal seizures interrupting specific parts of the brain.

It's hard to find celebrities to be role models and raise the profile of this hidden condition. A new film released in December 2014 called Electricity' follows the fictional life of a feisty and independent young woman with epilepsy played by Agyness Deyn. It realistically shows how having uncontrolled epilepsy, while taking medication regularly to lessen the frequency and severity of seizures, impacts her physical, emotional and mental wellbeing. Yet the central character conveys a key message, one that is shared by our supporters: epilepsy is only a part of their lives and it does not define who they are or what they can achieve.

Dealing with seizures

Did you know most seizures only last for a few minutes, stop on their own, and usually do not require a 999 call? Epilepsy awareness training will show how to respond appropriately if you are in that situation. It's useful to learn that a person usually comes out of a seizure once it has run its course. However, medical assistance should be sought if the seizure lasts longer than usual or if the person is still having continuous seizures after five minutes. This then becomes a medical emergency known as status epilepticus and can prove fatal if left untreated.

It is also helpful to check if the person is carrying an epilepsy ID card or wearing medical jewellery. This will give the person's name and details about the types of seizures, how long they last and treatment required, including emergency medication. Usually it lists the anti-epileptic drugs being used, who to contact in an emergency and how to help the individual as they come round. For example, one man found it took 30 minutes after a seizure before he could speak. He wrote this on his ID card and showed it to people he was due to meet.

Epilepsy awareness training expands on what is covered in basic first aid by highlighting key "do's and don'ts" that enable someone having a seizure to be cared for appropriately. Epilepsy Scotland's website offers the public a wide range of information and training options. People can also talk in confidence when they call our free helpline service on 0808 800 2200 or email or text their enquiries. Our twitter and facebook feeds alert our followers to latest news and developments, and give a voice to people's views about what it's like living with epilepsy.

How can employers become epilepsy aware?

Employment and equality legislation cover rights and responsibilities in the workplace. Epilepsy usually meets the definition of a disability as defined by the Equality Act, however, many people with epilepsy do not like to see themselves as disabled.

Epilepsy Scotland has been working hard to raise awareness of epilepsy in the employment sector. Our Employer of the Year award scheme has showcased organisations, from corner shops to multinationals, which offer outstanding practical support to an employee who has epilepsy. Our free epilepsy best practice certificate is also available all year round for employers. Those who can demonstrate they adhere to current legal requirements will automatically qualify, whether they have employees or volunteers who already have epilepsy or have just been diagnosed.

Another free downloadable resource provided to employers is our "Epilepsy and occupational health guide". This innovative publication is a tool to help understand risk assessments and equality legislation. The guide also highlights what makes a positive work experience for people with epilepsy. It outlines good practice measures like epilepsy awareness training for supervisors and co-workers. Making people with epilepsy feel supported helps employers to benefit more from their skills.

New research and developments

There is no definitive test for epilepsy but new inroads are being made into better diagnosis and management of seizures. Each year more anti-epileptic drugs come on the market while advances in surgical techniques or device based treatments offer improved seizure control. Research undertaken by the Glasgow Epilepsy Genetics Service can now pin point which medications are more likely to work for certain kinds of seizures. People can use apps on their mobile phones to keep a seizure diary. More sophisticated telecommunications allows people in rural and remote locations to video link from their GP surgery or hospital to a consultant neurologist hundreds of miles away.

A decade ago it was IT pie in the sky to imagine body sensors worn on a wristband that could anticipate seizure activity. The same goes for computer algorithms predicting a person's next seizure. Some of us have dreamed of the time when people with epilepsy have their own online health record that is linked with their GP, pharmacist and hospital.

What can you do to raise awareness?

Have you heard about Purple Day on 26 March? This international epilepsy day encourages people to take part in fun activities to raise awareness of epilepsy. Whether it's pre-school children in nurseries making purple cakes or older citizens doing sponsored walks dressed in purple, this is your chance to get people talking about epilepsy. Last year some of our Facebook followers even managed to have several Scottish landmarks lit up in purple.

There's also National Epilepsy Week (17-23 May) where organisations like ours offer lots of ideas to help you raise the level of understanding about epilepsy, either locally or nationally. People with the condition tell us that the best thing that could happen is a cure for epilepsy. Until then, the more we all know about epilepsy the easier it is for people to live with it.

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