‘Purple Day’ is an international effort dedicated to raising awareness about epilepsy worldwide. This year it falls on Thursday 26th, of March.
To find out a little bit more about Epilepsy in New Zealand and what help is available for people who suffer from Epilepsy I sat down with Brian Barnett from the Epilepsy Foundation of New Zealand to find out what they do and how they are changing the lives of some of the 80,000 people who live with Epilepsy every day.
Brian first got involved with the Epilepsy Foundation 3 years ago, after being a pro-athlete and working with the NZ YMCA & Canteen. Brain has experienced first-hand the difficulty that living with the condition can have for the parents, caregivers, and whole family, as his brother, who sadly passed away from Epilepsy had struggled with it for 30 years.
“I saw a real need for better organisation to help the 80,000 people in New Zealand living with epilepsy, some 27,000 of those live with Chronic Epilepsy”.
Brian started to implement on the ground events, which usually run 3 times a year, one of these events, which launched in 2014, was “Brain Train”- a nationwide epilepsy awareness and educational road show. The Epilepsy Foundation also put on fun, social weekends in the communities and put a real emphasis on offering support to those in need, by making the lines of communication always open and going to home visits if required.
“Our motto is ‘Seize Life’- we want the people who suffer from epilepsy to feel like they are involved and improve the quality of their life, by putting on regular events and activities we feel like this helps them out a lot”.
Here at Actions for Survival, one of our very own suffers with Chronic Epilepsy, Deidre Shand. I sat down with her to have a talk about what epilepsy means to her and what she thinks others need to know.
Deidre started to experience seizures in 1997, she was 12 years old. The type of Seizures she has is called Tonic Clonic, which basically means they are drop & convulsive seizures. They usually last between 1 – 5 minutes before consciousness is slowly regained. At the time this started happening the Doctors couldn’t give her or her family a definitive answer as to why she started to get seizures but think it could be related to Birth Trauma.
In 2001, when Deidre was 16, she had a drop seizure and fell down 4 concrete steps, breaking her jaw in 3 places. “This is one of my many seizures I’ve had that shows just how dangerous this condition can be”
In 2004, Deidre had a major operation to have her right temporal lobe removed in the hopes that in 3 months after the operation she would never experience a seizure again. Unfortunately this operation was unsuccessful. She went on to have another operation in 2011, this time to have a nerve stimulator implanted; this is like a pacemaker for the brain. Deidre’s family can usually tell when a seizure is about to happen, when this happens they get the magnet and swipe it over where her nerve stimulator is implanted, this doesn’t stop the seizure from happening but it can improve the effects and shorten the length of the seizure.
Deidre says the key to understanding epilepsy is knowledge, and that more knowledge is needed, which is where the Epilepsy Foundation of New Zealand come in. She says the more your family, friends and caregivers know about the different types of seizures the better, “They will be able to tell when you’re having a seizure based on your facial expressions or the way you are talking”
Deidre has faced both positives and negatives in her life in regards to having epilepsy. For her the negative always came in the form of getting work – all she has wanted to do all of her life is work, and nobody was willing to take a chance on her. That was until she went on TV to talk about Epilepsy and the challenge’s she faces finding a job. “I received a phone call the day after from Actions for Survival offering me a job in their office – This job has changed my life, it has given my life meaning”.
Every year Deidre celebrates Purple day by collecting money for ribbons at a table at the Pakuranga Plaza in East Auckland. On March 26th keep an eye out for people collecting for Purple Day!
If you’d like to know more about the Epilepsy Foundation, the events they hold and how to donate, click on through to http://epilepsyfoundation.org.nz/ to learn more!