Living with Epilepsy, a Mother's Story

The Epilepsy Society’s’ Wear it Purple Day | Friday 26th March 2021 #PurpleDay

This Friday is Epilepsy Awareness Day (also known as Purple Day), originally created by Cassidy Megan in 2008, a young girl from Canada living with epilepsy who wanted to encourage people to learn more and talk about the condition

Since it launched, Purple Day has become a successful global campaign day to encourage people to talk, raise awareness, and fundraise, to help make a difference to lives of many people (50 million people globally, according to WHO) living with epilepsy.

While there are so many campaigns like this around today, epilepsy is surrounded by stigma. So, to learn and talk about this particular condition is incredibly important. It really is a hidden disability.

Ordinarily I would write a ‘news’ article in the third person, but today I think it is fitting that write it in the first. Why? Because I am a mother of beautiful daughter who has lived with ‘medication resistant’ epilepsy for 7 years since the age of 10, plus I have an epileptic dog (yes, really), so in fact I write from experience and from the heart, which I hope you, the reader, will find a little more fascinating than simply recounting facts

As well as support from our fabulous NHS, I have experienced the benefit of the Epilepsy Society first hand: the helpline and their information, some of which I have passed to my daughters teachers to help support learning, making schools more aware of what my daughter or even other students have to cope with living with epilepsy. We have also participated in trials to help improve the mental health of those, especially young people, who are living with epilepsy. So, this charity, movement and awareness campaign really does deserve support.

Epilepsy is the most common chronic brain disease and affects people of all ages, over 600,000 people in the UK have epilepsy. An estimated 70% of people with epilepsy can be seizure free if properly diagnosed and treated. Unfortunately, there are also some, like my daughter, who do not properly respond to medication. Even worse, there are also many undiagnosed cases of epilepsy too, as seizures can manifest in many different ways, in fact there are over 40!

There are many challenges and impacts faced by people living with epilepsy. These may include:

• "Not doing well" at home, school, work, or with friends.
• Cognitive or learning problems that require special help or accommodations
• Symptoms of depression, anxiety, or other changes in mood or behaviour
• Problems sleeping (this is definitely the case for us, my daughter only seizures because of sleep)
• Unexplained injuries, falls, or other illnesses
• Thinning of the bones or osteoporosis
• Reproductive problems
• Risk of death – and my worst fear as a mother ‘status epilepticus’

People living with epilepsy can undergo endless medication testing, prodding and probing. It has been a long road and we have considered alternative therapies and tried some, (Lifestyle changes, CBD oil, acupuncture, vitamins, Ketogenic diet), but she still Seizures (average of 5 events a night).  In February 2020, my daughter had the opportunity to undergo a pioneering brain surgery at Great Ormond Street Hospital called ‘Visualase’, an MRI guided laser probe which ‘melts’ the identified faulty ‘knot’ in the brain which causes the seizures. Unfortunately, this particular operation was unsuccessful. However, she may get another go to get rid of that darned ‘knot’ (or lesion), as this procedure has now, through passionate campaigning, just been added to NHS funding and for people who have been identified with one faulty area causing seizures – this procedure really could be a game changer.

Medical advances are simply incredible, so I continue to have hope and optimism that one day my daughter may yet get seizure freedom – the ultimate goal for anyone living with epilepsy.  (Hers is just to drive!)

I must confess that before my daughters first seizure and perhaps like many, epilepsy conjured up many scary mental images; typically, the convulsing, rhythmic jerking movement of limbs, sometimes frothing at the mouth and an awful gurgling, choking noise, all from an individual who seems possessed, (indeed, this is what was believed a mere few centuries ago). Never did I anticipate, that one day, my life would become incredibly challenged by Epilepsy. It does not run in our families and literally just happened, which means that it could happen to anyone, any time. So, in the vein of the scouting motto – why not be prepared?

Campaigns like this can not only save lives through education and the banishment of ignorance, but also help with solidarity for those living with the condition. It really is important to know what to do if someone has a seizure, if you don’t then please do take the time watch this video, or there are many others if you run an internet search.

I wanted to tell our story merely to try to break the stigma, that individuals living with epilepsy are people, just like you and me, trying to live a normal life.  It’s just that they have electrical brainstorms which are a real inconvenience, to say the least…

If you do wish to make a valuable donation to help with continued research, support and campaigns that the Epilepsy society do, then please visit the link below.

https://epilepsysociety.org.uk/donate

Alternatively, a charity which is close to my heart, the amazing Great Ormond Street Hospital, Epilepsy research https://www.gosh.org/donate/gosh-epilepsy-research-appeal/

Thank you for reading - Written anonymously by a proud Kare Plus family member.