Unfortunately due to the global Covid-19 crisis many of the fundraising activities planned for Epilepsy Awareness Month were cancelled. So with today being March 26th - Purple Day I still felt it important to find a way to support Epilepsy WA and raise awareness as I've done every year.
What you need to know about Epilepsy
- Epilepsy is a disease of the brain that affects people of all ages
- A person who has epilepsy has a tendency to have spontaneous, recurrent seizures
- Not all seizures are epilepsy
- In Australia, over 12,000 people a year are diagnosed with epilepsy
- Seizures can vary from the briefest lapses of attention, confusion or unusual behaviours, to falls or convulsions
- With treatment, about 60–70% of people with epilepsy can be seizure free, yet about three quarters of people in developing countries do not get the treatment they need
- Epilepsy is linked with an increased risk of death, up to 2–3 times the general population
- Epilepsy can have a significant social and psychological impact and also affect employment opportunities
- People with epilepsy can face social stigma, discrimination and exclusion. A fundamental part of reducing this stigma is to raise public and professional awareness
- Seizures can also vary in frequency with some people having less than 1 per year while others can have several a day
Our story
My Mum was diagnosed with Epilepsy when she was a teenager. Her seizures started in her sleep and she thought she was just having bad dreams. Then she started having petit mal seizures otherwise known as absence seizures during the day, which eventually developed into grand mal seizures or tonic clonic seizures which is a loss of consciousness and violent muscle contractions.
My little sister and I always grew up understanding Mum was a bit different to other Mums. We had to understand from an early age what to do in an emergency because we were often home alone with her. We needed to know how to take care of her during and after a seizure which involves removing anything dangerous, putting her in the recovery position and timing her seizures. Mums seizures can sometimes be triggered by stress, flickering lights or if she doesnt take her medication. She used to have a few seconds to tell us she was about to have a seizure, I remember she would try to write it on a piece of paper because she couldn't speak but wouldn't be able to finish the word before she fell to the ground violently shaking. It can be very scary, not just to children but adults too. I know it still scares me now but I try not to panic. It can also be quite embarrassing for the person having a seizure when out in public.
I remember being in the car with Mum when I was 4 in New Zealand, she had a seizure on our street. She also had a serious car accident when we moved to Australia, my little sister was in the car this time. I remember we were out one night in Fremantle for chinese Mum had a seizure in the food court, she also has them in supermarkets, on the street and on public transport, also at home on her own. Mum wears a medic alert bracelet and usually is ok after a seizure just needing to go to bed afterwards but when she is in public someone will always call an ambulance so she gets stuck in ER for the afternoon sometimes needing to stay in overnight. Last time she was there for a week. I remember when I was 7 being the only kid after school waiting to be picked up and she never arrived, she had a seizure. I also remember as a teenager having to catch taxis to my first job at night because Mum was unable to drive or work for years due to her condition. Epileptics can obtain a driver's licence if their seizures are controlled by medication, they can also lose their licence when they have a seizure.
When I was 14 Mum had brain surgery to try eliminate or reduce her seizures. I couldn't tell you much about that time because without realizing it i've somehow erased that period from my memory. When I was pregnant with my first son Mum had three seizures in front of me at the hospital, one after another. I was there alone and I thought my Mum was dying. I had never seen her that bad before and it was quite traumatic. I can pinpoint that moment as the day I started getting panic attacks which i'm still dealing with today 7 years later. I remember thinking this is unfair and I should not have to deal with this by myself.
When I look through old photographs I often come across ones where my mum is covered in bruises, swelling, black eyes and cuts. There are also photos where she is in hospital with numerous wires attached to her head or where her hair was shaved off in place of staples from her brain surgery. Mum is the strongest and bravest woman I know. Over the years her condition has changed, what was once 1 or 2 seizures a year when I was younger has now become multiple seizures within the space of a few hours. There is a lot of support for parents of children who have epilepsy but what I've always struggled finding is support for children living with a parent who has epilepsy. This is something I personally would like to get involved with in the future and help facilitate.
Today my Mum is a Nanna enjoying her three grandchildren. We are educating our eldest son Leo on Nannas condition in the attempt to avoid him becoming scared and knowing how to call for help when Nanna has a seizure and he is alone with her. He recently learnt how to use Nannas phone to call me in an emergency which was reassuring. Mum still can't drive and catches public transport everywhere, she also can't work right now due to her last set of seizures.
This isn't something I share, it is something very personal especially for my Mum and with her blessing I am sharing our story today on Purple Day to raise awareness for Epilepsy. See first aid for seizures below, it is so important everyone knows this as chances are you will witness someone have a seizure one day. Learn more by visiting the websites below and supporting these organisations. Mel x
Photo of my Mum and I by Erin McKenzie Creative E
