Raising awareness for epilepsy this Purple Day

Posted By: Enable Magazine 26 March 2020

Today (26 March) is Purple Day, which raises awareness about epilepsy. A condition which is often misunderstood, Purple Day aims to set straight any misconceptions and bring together people who are living with the condition.

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Anita had her first absence seizure in October 2015. She wasn’t diagnosed until after her first generalised seizure in early 2018. She can have between 3 and 10 absences a month and tonic-clonic seizures on a monthly basis, and has found her epilepsy difficult to control with meds.⠀ ⠀ Anita says her epilepsy has been a hindrance in her working life. Firstly, her commute to work doubled when she had to give up her driving licence. “Taking 3 hours of your day to do what you used to in half the time was a big adjustment. The main barriers for me are fear of being on my own and what happens if it happens in public. Not being able to drive and relying on public transport only compounds that.”⠀ ⠀ Barriers to work have been an issue, too. A lack of understanding from previous employers, who were reluctant to adapt their health and safety policies, meant Anita lost her job. The stress this created worsened her condition. ⠀ ⠀ “As well as those in authority, my colleagues also changed how they treated me. So I didn't know how to portray my epilepsy. Often I wanted to play it down, to avoid being seen as too much of a risk. But then when the condition became serious and I needed the time off work, it back-fired. People felt like I’d hidden it from them.”⠀ ⠀ Understandably, Anita feels incredibly passionate about employment issues. “I have had terrible experiences with employers and had to sign non-disclosure agreements. I’ve since realised there are more situations like mine under the radar. So many cases are being settled privately and, due to the invisibility of epilepsy, the discrimination can be harder to spot.” ⠀ ⠀ Recently, Anita is proud to have a new job with an employer who is understanding and flexible, offering staff specific epilepsy training. “It's easy to think ‘no employer is going to want me’. But staying strong and being bold enough to push for the rights you know you deserve, and which the law protects you with is important to me.”⠀ ⠀ This determination has led Anita to start training as a solicitor. She hopes to go into law, and challenge the discrimination faced by people with epilepsy.⠀ ⠀ .⠀ .⠀ .⠀ .⠀ #epilepsy #epilepsyawareness #epilepsypositivity

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WHAT IS EPILEPSY?

Epilepsy is a condition that affects the brain and causes seizures. Seizures are waves of electrical activity in the brain that temporarily affect how it works.

The condition can develop at any age, however it’s most commonly developed in childhood, or over the age of 60. It is a lifelong condition, but certain medications and treatments can help manage symptoms.

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Tina's story, part 2 💜⠀ ⠀ "So I was now dealing with 4 hours a day on the bus travelling to work, to an already struggling business. Coming home physically mentally and emotionally exhausted and upset from the sheer tiredness of the journey. Many people said “it’s just a bus ride”. Yeah it was. But it’s not relaxing. It’s not enjoyable. It’s 2 hours each way, where I couldn’t be comfortable or take a pee, the noise and the heat was unbearable at times. All this was contributing to my epilepsy.⠀ ⠀ "I was carrying the guilt and the responsibility for being the one to come and say I couldn’t do it anymore. In my heart I knew, there was no telling when I would get my licence back. And I certainly couldn’t do this for ever. So I chose, for my health and my husband and children to say no more. I wanted to walk away from the salon. The hardest decision ever. I loved my job so much and all our wonderful clients over the years had become our family. The backlash from some individuals was unreal. People made judgements on what they thought they knew and how selfish I was being.⠀ ⠀ "I chose not to make my medical circumstances public. I was still coming to terms with the life changing events unfolding before me, my children and my husband. Epilepsy is life changing. Like so many other hidden disabilities.⠀ ⠀ "In the months that followed, I discovered that I have a problem with the space developing around my Hippocampus part in my brain. At the age of 42, seizures which can be fatal, dementia, memory loss and altered mental state is not words I thought I would ever be hearing. Yet here I am. Wondering when the day will be I don’t recognise my husband. Or my son. Richard didn’t sign up for this when we started dating 3 years ago. It’s not fair on him. We married last year. In sickness and in health. I literally choked when I said the words in church. He meant it. He held my hand so tight and He told me take each day at a time and we will deal with what comes."⠀ ⠀ (2/3)⠀ ⠀ .⠀ .⠀ .⠀ .⠀ .⠀ ⠀ #epilepsy #epilepsyawareness #epilepsysupport #epilepsysucks #seizures #seizurefree #seizurefreedom #purpleday #purpleday2020 #brainawareness #brainawarenessweek #brainawarenessweek2020

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SYMPTOMS

Seizures can present differently in different people and can affect everyone in a variety of ways. However, there are some key signs to look out for:

  • uncontrollable jerking or shaking
  • losing awareness and staring into space
  • becoming stiff
  • collapsing
  • tingling in legs or arms
  • unusual smells or tastes
  • fainting, or being unable to remember what happened

If you have a seizure and you’ve never had one before, it’s essential to seek medical attention immediately, or phone NHS 24 (111) for advice.

Having a seizure doesn’t mean you have epilepsy, as they can be a sign of other conditions, so it’s important to speak to a doctor urgently, as seizures can cause other medical complications, or in case it’s caused by another underlying health issue.

TREATMENT

Though there is no definitive cure for epilepsy that works for every person, there are treatment options available that can help to manage them and even stop them completely.

Medicines called anti-epileptic drugs are used as the main treatment option. However, if these are ineffective, other options include:

  • surgery to remove a small part of the brain that is causing the seizures
  • a particular diet, known at the ketogenic diet, that can help keep seizures under control
  • a procedure that inserts a small electrical device into the body to help alleviate seizures

PURPLE DAY

Purple Day is celebrated each year to raise awareness about the condition and bring those that are living with it together. Founded in 2008 by Cassidy Megan, she wanted people to start talking about the condition, and remove any stigma and ignorance about what epilepsy is, and how it affects people.

In the UK, various charities are dedicated to talking about epilepsy and helping those living with it every day, but particularly on Purple Day.

Epilepsy Action, Epilepsy Society and Young Epilepsy are just a few of the charities that can support you if you or a loved one has been diagnosed with the condition.

If you want to get involved with Purple Day, make sure to look your favourite purple clothes out of the wardrobe and get sharing selfies across social media to raise awareness.

How will you be celebrating this Purple Day? Let us know on Twitter and Instagram.

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