I am hosting an event to Make March Purple for epilepsy
GO BIG BOLD AND PURPLE Every year on the same day across the world Epilepsy is greatly recognised on the 26th of March celebrated as “ purple day”
MY STORY;
I was diagnosed as a teen Nearly 5 years ago with the most severe form of Epilepsy . In 2017 I was in the passenger seat on the way home just like any other ordinary day , suddenly something Didn’t feel right . I told my nan who was amongst side me “ Nan I don’t feel well something doesn’t feel right , the trees flickering is making me feel weird”. That’s the last I remember , within seconds of my statement I had fallen into a severe tonic clonic ( grand mal) seizure and woke up covered in vomit where by this time both my mum had arrived ( from 20 minutes away) and the ambulance I was just in Hysterics and so confused as to what just happened. It wasn’t long until tests were being done and I was put onto medication which seemed to be treated me and preventing any further seizure activity well. ( maybe one or two a year) .
Unfortunately, I had a severe reaction to one of my medications a few years later which caused a severe rash across my neck which could have lead to death if I didn’t immediately stop taking the medication as it could block my airways . Put on a new medication and things were going ok. Come October 2019 my world was flipped ( actually shaken the hell) around. I had a cluster of seizures whilst in my Tafe ( study class) and since then ive had daily occurrence of seizures ( yes every single day ) ranging in severity . Despite various treatments and tests I am still not controlled which posses a risk of SUDEP.
What is SUDEP ( Sudden unexpected death in epilepsy) you may ask?
Well as some of you know famous actor and star Cameron Boyce passed from this. To date researches cannot find what causes it which is why greater research needs to be conducted. I am at risk due to being and or having ;
Uncontrolled seizures
Tonic clonic seizures during sleep
Frequent seizure activity
Seizures beginning at a young age
Many years of living with Epilepsy.
WHAT IS MY GOAL FOR PURPLE DAY?
I hope that my fundraisers will help researchers to gain more knowledge and hopefully more treatment options in spite that I can hopefully live through this tough time and help any others going through the same struggle .
WHAT I WILL BE DOING
On March 26-28th( mark your calendars) I will be holding raffles, a bake sale , bbq and selling hair accessories to raise funds. Whilst these photos may be disheartening it shows the pain many of us battling Epilepsy go through .
My Achievements
My Updates
