Purple Day for Epilepsy Awareness, a Personal Plea!

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EpilespyPurple Day for epilepsy is something relatively new for me. After being diagnosed with epilepsy in 2010, it is only now in 2014 that I am aware of Purple Day. Purple day is a grassroots effort dedicated to increasing awareness about Epilepsy. On march 26th of each year people around the world are asked to spread the word about epilepsy. So join me in wearing purple and spreading the word!

Unfortunately in todays society, although advanced in technology…is still not a world advanced enough to remove the stigma associated with epilepsy. Most people are uneducated and unaware of what it means to have a diagnosis of Epilepsy. Epilepsy does not automatically mean that you suffer from a mental illness or that we are any different from the person next to us.

In 2010, I was educating colleagues about febrile seizures in children when I came across information about Temporal Lobe Epilepsy – I begun ticking boxes for symptoms and found that most of the symptoms described the strange sensations and turns I had been having. I approached my GP who refused to do any testing and believed I had an anxiety disorder. He handed be a phamplet and referred me to a psychologist. I went to a second GP who thankfully was more interested and sent me for further testing. Some 18months later, numerous scans including the longest 24hours of my life where I wasn’t allowed to sleep at all prior to a sleep deprived EEG – nothing was pointing to Epilepsy. I then saw an “epileptologist” – I didn’t even know such a profession could exist. I was formally diagnosed with Temporal Lobe Epilepsy with simple partial seizures in 2012 at the age of 25. My form of epilepsy is just one of roughly 40 types of epilepsy – a type that does not show in tests unless i’m having one at the time.

My case is just one of many, that shows how difficult the diagnosis process is for some people with epilepsy. The trials with medications are sometime grueling. There are restrictions on driving and licences, there are drug interactions, and the risk of simple seizures progressing to complex seizures, as well as the risk of injury if complex seizures are not controlled well.

Epilepsy is more common than MS, Parkinson’s Disease and Cerebral Palsy combined and affects roughly 2% of the population at any one time – equating to 50million people.

Many people are able to outgrow their epilepsy or are in long term remission from seizures. However, for some people Epilepsy can have profound social, physical and psychological consequences.

The cause of epilepsy in most people is unknown, but for most is due to illness, stroke, disease, tumours, injury or birth defects. For me, the exact cause of my epilepsy is unknown and there is no significant history to suggest a reason – making diagnosis that much more difficult.

My reasons for participation in PURPLE DAY are obvious given my diagnosis. However, I am also involved to educate others about epilepsy and also to increase peoples awareness of First Aid for Seizures.

I’m inspired by the work that Epilepsy Association of Western Australia (Inc) do, so I wanted to raise money for them as part of my participation in Purple Day 2014. Please help me help them by giving whatever you can using the ‘GIVE NOW’ button. The more people that know about Epilepsy Association of Western Australia (Inc), the greater their impact, so please also spread the word by sharing my page with your friends and family. Thank you in advance for your generosity, it means a lot!

Donate at:

https://purpleday2014wa.everydayhero.com/au/amanda

Thanks for reading!

Nurse Manager, Panaceum Group, Amanda Francis.

SEIZURE FIRST AID

How much do you know about Seizures? What would you do if someone had a seizure in front of you?

DO

  • Stay with the person
  • Time seizure
  • Protect from injury especially the head
  • Roll onto side after jerking stops OR immediately if food/fluid/vomit in mouth
  • Observe and monitor breathing
  • Gently reassure until recovered

DO NOT

  • Put anything in the person’s mouth
  • Restrain the person
  • Move person unless in danger

CALL THE AMBULANCE IF:

  • You are in any doubt
  • Injury has occurred
  • There is food/fluid/vomit in mouth
  • Seizure occurs in water
  • Person has breathing difficulties after jerking stops
  • Another seizure quickly follows
  • Seizure lasts longer than 5 mins
  • The person is non-responsive for more than 5 mins after the seizure ends