Blog 42: Purple Day 2016

So it’s that time of year again when Epilepsy (hopefully) takes the spot light on Purple Day. When I first started writing this blog I realised that I actually knew very little about its origins. Every year I am reminded by the charities and Facebook and I dutifully change my profile picture, share my story and more pictures, happy for any awareness shed on this horrible condition. However, I never really stopped to look into it all.

What is Purple Day?

Held annually on 26th March, Purple Day was first established in 2008 by Cassidy Megan, a young girl who lives with epilepsy. Cassidy created the idea of Purple Day, motivated by her own struggles with epilepsy. Her goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. A seemingly simple yet huge task! (Read more here about Purple Day itself: www.purpleday.org)

"Someone you know may have epilepsy and just be scared to talk about it. And that’s completely understandable. But that person needs to know it’s ok to talk." - Cassidy is quoted as saying and she is right.

Get Involved

What I found as I was doing a little research is that Purple Day really is an international day! It is marked all over the world, last year venues across the UK including London King’s Cross mainline station, The Spinnaker Tower in Portsmouth, The Blackpool Tower and Leeds’ First Direct arena all lit-up purple on 26 March to raise awareness of epilepsy. That said as amazing as it is getting your local areas to light up Purple it’s the small things that will also really help raise awareness. How about starting with your Facebook profile? If you wish to add a twibbon you can do so here: http://twibbon.com/support/purple-day-6#

Or how about painting your nails purple? What about a purple top or scarf? This is a fairly simple one with minimal effort! However in my preparations for today I realised that Noah owns no purple! So I headed out to buy him a t-shirt, couldn’t find one and yet still came home with a bag of new clothes! :-)

How about sharing seizure first aid? A blog or article you may have read about epilepsy that others may find insightful or helpful? All of the charities will have accurate information if you wish to share facts.

All of the charities will be sharing text codes today in order to raise money. All are so worthy, you can also give to Young Epilepsy here on my page: www.justgiving.com/waddams

And Epilepsy Action are selling a new wristband this year for just £2: https://shop.epilepsy.org.uk/product/purple-day-wristband-new-for-2015/45170/507 . We picked ours up at the Epilepsy Action awards and I love it.

An idea – buy someone some flowers! Lavender is recognised as international flower of epilepsy. This flower is said to symbolise isolation and loneliness, often associated with epilepsy.

Educate yourself a little, just have a read and see who are the famous people who have epilepsy.

And if nothing else just talk about Epilepsy! Even if it’s to tell others how I am driving you mad by talking about it! It is all awareness and it will all help.

FACTS

50 Million people have epilepsy worldwide, that is an estimated 1 in 100 yet it still remains heavily in the shadows. Not everyone can identify specific events or circumstances that affect seizures, but some are able to recognize definite seizure triggers. Some common triggers include:

• Forgetting to take prescribed seizure medication
• Lack of sleep
• Missing meals
• Stress, excitement, emotional upset
• Menstrual cycle / hormonal changes
• Illness or fever
• Low seizure medication levels
• Medications other than prescribed seizure medication
• Flickering lights of computers, television, videos, etc., and sometimes even bright sunlight
• Street drugs

· Epilepsy is a variable condition that affects different people in different ways.

· There are over 40 different types of seizure. What seizures look like can vary. For example someone may go ‘blank’ for a couple of seconds, they may wander around and be quite confused, or they may fall to the ground and shake (convulse). Not all seizures involve convulsions.

· Some people are unconscious during their seizures and so they do not remember what happens to them. It can be really useful to have a description of what happened from someone who saw their seizure to help with diagnosis. This is sometimes called an ‘eyewitness account’.

· There are many different causes (reasons) why someone might develop epilepsy. Sometimes a cause of epilepsy can be found (for example a head injury) but sometimes the person’s epilepsy starts ‘out of the blue’ and the cause cannot be found. (Like mine!)

There are a few well-known names with Epilepsy: Alexander the Great, Julius Ceasar, Charles Dickens, Vincent Van Gogh. In more recent times Kelly Osbourne, Susan Boyle, Katie Hopkins, Leon Legge and a hero of mine Dai Greene. (You can see more here: https://en.wikipedia.org/wiki/List_of_people_with_epilepsy)

There are Forty Saints for Epilepsy: Of these forty saints for epilepsy, the best known by far is Saint Valentine. But who are the others? Some, like St Anthony the Abbot were known in their lifetimes as healers. Others, like St Apollinaris and St Giles were considered to be miracle workers. Their reputation for “curing” epilepsy made them obvious choices for people to appeal to.

Have a go Epilepsy Actions Fact or Myth quiz:

https://www.epilepsy.org.uk/campaigns/epilepsy-week/2013/myth-fact-quiz?gclid=CPPDotnb3MsCFeV92wod-U8FTg%3Fgclid%3DCPPDotnb3MsCFeV92wod-U8FTg

US

Our purple day is being spent with our best friends, and I am sure Noah is going to be very spoilt by Auntie Lucy and Uncle Stephen! I will be painting my toes for the first time since before I had Noah (yes it really has been that long!) and wearing a purple top. I am sure I will also bore my Facebook friends and twitter followers senseless with my facts, pictures and stories. But do you know what, I don’t mind. Once upon a time I was a little girl without epilepsy. Once upon a time I was a 21 year old who had been seizure free for 7 years. You wonder why I shout so loudly about it: Because I know what it was like to be without this condition. I had 7 blissful teenage years without it. I know what it is like to have control and then lose it again in the worst way possible. So excuse me if I take today to shout that little bit louder. But once upon a time I didn’t have epilepsy either.

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