My name is an Esther Brenda McLaughlin.

Epilepsy can affect you at any point of your life, it’s a myth that you are born with it, this is not true. No matter what age you are,  you can still get epilepsy. 
It’s not just epileptics and family who have to deal with it, it is everyone’s problem, as I say this could be you one day. Please be aware of this and more considerate towards someone having a seizure.

Knowledge can be power and you could save a life just by being informed and knowing how to help and understand this condition and the risks.
I myself have been left totally heartbroken.

My only son passed suddenly with this diagnosis of Sudep in Epilepsy. Not ever knowing of this condition, we were left to deal with it all ourselves. My son was absolutely let down by neurologists and his doctor.

Why do neurologists apply the measure “Don’t Ask, Don’t Tell” to patients of Epilepsy? Not wanting to ‘scare’ you while holding back this risk in Epilepsy.

Would you rather be told about this or just let it remain unknown?

No matter what type of seizure you suffer from. We must be informed!

Neurologists must advise of this, I now know too many grieving parents who are in the same situation as me, not knowing about Sudep in epilepsy either. This is very wrong!

Never, ever being warned of this 1 in 1,000 risk in epilepsy, that’s higher if seizures are not controlled.
17 tough years of Tonic Clonic seizures with my son, no help or guidance ever given. Never told we could have a seizure alarm, pillows etc.

Shortages of medications is another problem. People not getting their medications is not acceptable!

Why are there no ads on television on  epilepsy? Heart attacks, strokes, every other illness are all covered on tv.
Why is epilepsy and SUDEP not discussed on the television to highlight this issue more?.

 Maybe people would understand the condition more. It’s not just a seizure, it’s their mental health declining, anxiety, depression, medications that are so strong that their bodies find it hard to process. Days in bed to recover!

This is never, ever highlighted! 

I am a mother mourning the devastating loss of her only child to SUDEP (Sudden Unexpected Death in Epilepsy).
My son, John Paul McLaughlin, suddenly passed away on 09/01/2022 aged just 34 years old.

John Paul battled for 17 long, tough years with severe tonic clonic seizures. He fought so hard!

So many injuries i seen him go through. Broken ribs, black eyes, broken fingers. He was a true epilepsy warrior.

Unfortunately John Paul’s  seizures were never controlled with medication.

SUDEP is a devastating reality for approximately 1 in 1,000 people with epilepsy each year, which rises to more to 50-1000 when seizures are more severe and uncontrollable with medication. 

Its also believed that 80% of all deaths in epilepsy are preventable.

We were never told of SUDEP in Epilepsy during the 17 years my son struggled on with his condition. 
Not once ever being warned!

No guidance at all!
This is not only a failure on their part but also an unacceptable dereliction of duty, robbing us of the right to full knowledge and understanding of my son's condition.

This alarming lack of awareness and disclosure is not just my experience – it is shared by 99% of families affected by epilepsy, who remain oblivious of the risk of SUDEP. This silence causes immeasurable suffering and prevents patients and families from making informed decisions about their own health and well being. This is wrong!

This petition is a plea for change in our healthcare system. I call on our medical community, healthcare policy leaders, health boards and professionals treating epilepsy patients, to endorse mandatory discussion of SUDEP risks as part of routine care. 

Epilepsy patients and their families deserve complete transparency and awareness regarding their condition and its potential implications.

Right now, the health boards have no plans to update the rules of Sudep, they say it is discussed already but if that’s the case why do 90% of neurologists Not advise their patients.

Although it is too late for me or my son, please, please, let's make sure it's not too late for other parents to make sure they are at the very least advised on Sudep. Please sign this petition to bring about this vital change in our healthcare system's approach to epilepsy care. Your signature could help contribute to saving lives and preventing other families from experiencing the pain i have endured. Thank you 🙏 #SudepAwareness #EpilepsyWarriors