OK, I’ll admit it. I’m procrastinating. I have 30+ purple ribbons to cut and pin for Vegemite’s talk tomorrow, and haven’t yet got the motivation to get started.
Why is Vegemite taking purple ribbons to school tomorrow? Because 26 March is Purple Day – the international day for epilepsy awareness. And Vegemite understands the impact that epilepsy can have and, I’m proud to say, is committed to raising awareness. Last year she took Gracie, her epilepsy awareness bear (thank you Epilepsy Action Australia!), to class to talk about epilepsy.
This year, she has put a huge effort into her presentation – writing out what she wants to say, providing a number of illustrations, and practicing her talk endlessly on both QB and me. The ribbons will be given to everyone in her class at the end of the talk – along with purple balloons that her teacher is providing – as a reminder of the importance of Purple Day.
And it is important. According to the Epilepsy Foundation, around 65 million people worldwide have epilepsy. And around one-third of those with epilepsy have uncontrolled seizures, where no current medication or treatment works to prevent their seizures. Epilepsy can be fatal, with SUDEP (sudden unexpected death in epilepsy) and status epilepticus (prolonged seizures) the most common causes. Raising awareness of epilepsy can secure better funding for research, improve care and treatment, and remove the stigma of epilepsy.
Lil Z has uncontrolled seizures. She is currently on three anti-epileptic medications: Epilim, Keppra and Topamax. She’s previously been on Tegratol and Trileptal as well. All seizure medications come with a raft of side-effects, ranging from drowsiness, nausea and weight gain or loss to liver failure, hearing or vision loss and kidney stones. It can also affect a person’s behaviour, causing anxiety, aggression or lack of concentration. Anti-epileptic medication is not something you go into lightly – it is often choosing the lesser of two evils.
When Lil Z is going through a ‘good patch’ her seizures can be controlled for up to a month at a time. However, when she hits a growth spurt or is unwell (like now), she will have seizures nearly every day. Her seizures are totally unpredictable – she has them at all times of the day and without warning – although she often gets upset and anxious shortly before the seizure occurs and most (but not all) of her seizures coincide with her waking or falling asleep.
Her ‘usual seizure’ lasts for around 2-3 minutes and involves her going extremely rigid – both arms are extended out in front of her while her left leg bends up to her chest and her right leg extends. Her head turns sharply to the left and her eyes are fixed. She often vomits when coming out of a seizure and if her seizure goes for more than 5 minutes we have Midazolam, her ‘rescue med’, that often (but not always) stops the seizure.
Lil Z has had status epilepticus on a number of occasions, during which her seizures have lasted for over an hour and required strong drugs to stop the seizure. She has also had cluster seizures, where she has had repeated seizures for an hour or more.
As a big sister, Vegemite has seen more seizures than most people do in their lifetime. She knows what to do (make sure Lil Z is safe and roll her onto her side so she doesn’t choke on her vomit). She holds Lil Z’s hand and speaks softly to her while she’s seizing. And on a number of occasions, she has accompanied Lil Z and me to the hospital in the ambulance.
So, Purple Day is important, not just for Lil Z, but for Vegemite as well. And I am very proud that she is willing to share her experiences with her class.
To learn more about Purple Day, epilepsy and how you can help, you can see: www.purpleday.org or check out your local epilepsy organisation.