Why I’m wearing purple on Friday 26th May

On Friday 26th May 2021, it’s time to raid your wardrobe and dress in purple to show your support for Purple Day.

What is Purple Day?

Purple Day is an international grassroots effort dedicated to raising awareness about epilepsy worldwide. Last year, people in more than 85 countries took part.

The first ever Purple Day took place in 2008 and was organised by an inspirational young woman called Cassidy Megan who wanted to get people talking about epilepsy, dispel the myths and let those who suffer from seizures know that they’re not alone.

What is epilepsy?

If you’re not really familiar with epilepsy, it’s a neurological disorder of the central nervous system – specifically the brain – that is characterised by the tendency to have recurrent seizures.

What many people don’t realise is that there are different types of seizures, so epilepsy can look vastly different from one person to the next.

Seizures are defined as a “brief, abnormal, excessive surge of electrical activity in the brain that causes a sometimes noticeable change in behaviour”.

This could be blank stares, muscle spasms, uncontrolled movements, altered awareness, odd sensations or a convulsion. 

Some people who are diagnosed with epilepsy only experience a small number of seizures in their lifetime while others may experience seizures multiple times a day.

In 70% of cases, the right medication or combination of meds can successfully control epilepsy, enabling a person to live seizure-free. The remaining 30% of people are classed as having ‘drug resistant’ epilepsy, although there may be other treatment options to help reduce or control their seizures.

Elijah’s epilepsy

I’m keen to support Purple Day because my son Elijah has epilepsy, in addition to a number of other complex health conditions.

Elijah wasn’t born with epilepsy; it is something he lives with as a direct result of catastrophic brain damage caused by a post-surgical infection when he was 18 months old.

Since then, epilepsy has been ever present in our lives together.

Life has two seasons

Currently, Elijah experiences what I describe as “quiet seasons” and “turbulent seasons” in terms of his life with epilepsy.

During a quiet season, Elijah may go two or three days at a time without any seizures. Typically, he’ll have “laughing”gelastic seizures during this time. 

(With gelastic seizures, the person sounds like they’re laughing but the laugh can be best described as “empty” or “hollow” because it’s not the real thing. Approximately one in 1,000 children with epilepsy experience gelastic seizures; they’re more common in boys than girls.)

During turbulent seasons, Elijah can have a variety of seizure types multiple times a day.

Just a few days ago, for example, I got up ready for a busy day of work ahead only to be told by Elijah’s morning carers that he was having a rough morning that had involved a cluster of seizures. 

We had been due to take Elijah to an ENT outpatients’ clinical appointment but that had to be cancelled so Elijah could have the day to rest.

This was frustrating as ear infections often cause Elijah’s seizures and we had been hoping to see someone about his latest ear infection.

Later in the morning, he perked up but he still wasn’t happy to go in his chair. He’s been using Eye Gaze technology more over the last few weeks and I can’t help but wonder if this is tiring him out and increasing his seizure activity.

Assessing Elijah’s seizures

Every time Elijah experiences a turbulent season, my mind goes into overdrive. 

Why has his seizure activity increased? Is he tired? Is he in pain? Does he have an ear infection? 

What else could be going on with him? Is there anything we need to do?

His more severe seizures often require intensive clinical interventions, so we always need to be ready for that.

Some of his seizures are quite difficult to watch. He loses colour, taking on a bluish-grey pallor and sometimes holds his breath involuntarily. I worry about that happening when I’m not there, even though he’s surrounded by carers.

Due to his communication difficulties, it’s hard to know exactly how Elijah feels after a seizure. Does he feel confused or have a headache, for example? He often expresses that he’s wiped out and needs rest but I’m hoping, as he grows more comfortable with the Eye Gaze software, he’ll be able to share more about what he’s experiencing post-seizure.

It’s the unpredictability

As a parent of a child with epilepsy, I think it’s the unpredictability that makes this condition so hard to live with. We have to plan everything with the view that things might have to change, be cancelled or rescheduled at the last minute.

It always comes as a bit of a blow when we move from a quiet season into more turbulent times. And after the worst times, it often takes a while to register that the worst of the storm is over (for now) and we’re heading back into quieter, calmer seas.

Currently, around 600,000 people in the UK have epilepsy (that’s about one in every 100 people). Even if their seizures are well controlled by medication, they all live with a degree of unpredictability and the challenging that come from living with a hidden disability.

I will be wearing purple with pride on Friday 26th March. I hope you will join me. Let’s shout about Purple Day far and wide!

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