International Purple Day: Raising awareness of epilepsy
Purple Day is a worldwide event dedicated to raising awareness about epilepsy. Since Canadian Cassidy Megan created Purple Day in 2008, March 26th has seen people from across the globe join together for the cause.
Supporting Purple Day can be as simple as wearing an item of purple clothing. However many organise events to not only raise money for epilepsy charities, but to give people a chance to discuss epilepsy and meet others with the condition.
600,000 UK people living with epilepsy
Purple Day offers fantastic support for those who suffer from epilepsy as well as their families and friends. There are currently over 600,000 people in the UK who are living with epilepsy. Yet despite these numbers the condition is still often misunderstood by the public. 1 in 10 people will have a seizure at some time in their lives.
Epilepsy is a condition that is characterised by seizures. A seizure is caused by a disturbance of electrical activity in the brain. This can then can manifest itself physically
in a number of ways. Seizures can be mild or severe. A mild seizure can cause brief loss of consciousness and loss of muscle tone. However more severe seizures can leave the sufferer totally unconsciousness and their body stiff.
Do and Don’ts for Seizures
If you are with someone and they are having a seizure that causes jerky body movements (know as a tonic-clonic seizure ) you should do the following:
- move them from anything that could cause them injury, such as a hot stove or away from traffic
- note the time of that the seizure began, this can be important for medical treatment later. Try and time the seizure.
- rest their head on clothing or a cushion if they are on the floor
- help them to breathe by loosening ties, scarfs or other tight clothing around their necks
- when the convulsions begin to stop, put them in the recovery position by turning them on their side, again keeping their airway open
- reassure them and talk to them gently. Having a seizure causes embarrassment and anxiety. People are often confused when they come round. Stay with them.
Don’t put your fingers or anything else in the person’s mouth, they will not ‘swallow their tongue’ although they may bite it but it will heal and not cause lasting damage. Putting anything into the persons mouth could be dangerous or cause them harm.
When should I call an ambulance?
People with epilepsy may have seizures quite frequently and do not need to go to the hospital each time. Most seizures last less than 5 minutes. The person will usually be able to let you know if they require an ambulance or not. People with epilepsy may have a mediband, sos bracelet or necklace or carry an emergency card to let people know what to do.
You should call an ambulance by dialing 999, if:
- you know that the person has never had a seizure before
- the seizure goes on for more than 5 minutes
- seizures occur in a series, and they appear to stop, but then begin again
- the person does not regain consciousness or is having difficulty breathing
Although epilepsy is relatively common in the UK, there are rarer epileptic conditions. My son has Dravet Syndrome which is a rare and life-threatening form of epilepsy that is diagnosed in children. Dravet Syndrome affects around 1 in 30,000 children in the UK. Whilst this is rare, they are around 200 families on our UK Dravet Facebook group.
Many children who are diagnosed with Dravet Syndrome develop normally until they have their first seizure around 3 to 6 months old. After the epilepsy begins children will gradually lose the developmental skills they previously had and find it hard to progress and learn. The developmental issues that occur with Dravet Syndrome can cause delays in speech and language, motor skills and the functioning of the nervous system.
Whether it is rarer forms of epilepsy such as Dravet Syndrome, or common forms – the effect of the symptoms strongly impact upon the quality of life of those that have epilepsy. That is why global awareness raising events like Purple Day are so important in raising funds and over coming the stigma that can come with the condition.
The XL Challenge
A fun way to support Dravet Syndrome charities and epilepsy research this year is to follow David of thexlchallenge.com. David has so far completed challenges including a dip in the sea for New Years Day, fun runs, eating bugs in a bush tucker challenge, half marathons and Terror nights!
— The XL Challenge (@theXLchallenge) March 15, 2013
David is doing 40 challenges in his 40th year and raising lots of money and awareness of Dravet Syndrome and epilepsy along the way.
He still has many unusual tasks to complete this year, follow him on twitter, check out his page and sponsor him!
Getting Involved in Purple Day 2013
To celebrate Purple Day 2013, we are offering a 10 free pairs of purple Greeper Laces to our readers who are willing to share their thoughts on the event.
Perhaps you’re hosting a Purple Day party, or taking part in a sponsored event? Epilepsy Research UK offer a fundraising pack filled with ideas to raise awareness and bring support to those with epilepsy this Purple Day. From wearing purple to school or work, or even dying your hair purple – like Helen Webster of Salisbury.
Purple Day Laces Giveaway!
We’d love to hear your Purple Day stories or accounts of living with epilepsy. Or even a mention of Purple day on your blog to help raise epilepsy awareness. Simply write a short blog post (at least 200 words) and give Purple Day a mention, leave a comment below. We will send you a free pair of awesome ‘once applied always tied’ purple Greeper Laces. (offer limited to UK residents, 10 pairs to give away!) **Sorry Offer Now Closed**