We need to Demand Better Awareness and Disclosure About SUDEP Risks to Epilepsy Patients..

Epilepsy is a chronic

noncommunicable disease of the brain

that affects people of all ages.

Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.

Firstly 1000 deaths a year are caused by epilepsy and that number is rising. You see plenty of leaflets in hospitals about heart disease and different cancers, BUT NOTHING ABOUT EPILEPSY!!! 1 in 131 people in the UK have epilepsy.

Not everyone with epilepsy is aware of or told about SUDEP (Sudden Unexpected Death In Epilepsy) and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. 

If someone has epilepsy they need to know the dangers and that's why i call on the government to create an awareness campaign for national Epilepsy week , to have leaflets in hospitals , doctors etc to put the disease in the spotlight.

People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

It is time to change this. So that every person with epilepsy, their families and health professional are not only aware of these risks (which can lead to death if ignored) but are able to take an active role in discussing, reviewing and reducing them.

Please sign this petition to encourage the medical profession to be braver, to talk about the risks with as many patients as they see, armed with information about the risks and how to manage them.  This  petition is to get help to raise awareness and funding for this horrible illness, and how severe SUDEP is.

I’m calling on the government to have discussions on SUDEP be mandatory by all medical professionals  to any epileptic sufferers and the families .

Anyone can develop epilepsy and have already developed it. So feel free to Deny the severity of or even mock it … untill it develops in you or someone you love .

People with epilepsy often experience changes in their quality of life such as less mobility, as well as the impact on learning, school attendance, employment, relationships, and social interactions and death ( SUDEP) 

there needs to be more awareness. Appointments need to be regular instead of every 6 months with a specialist and not on the telephone , medication reviews are a must .

Everyone needs to be aware of how Dangerous epilepsy is ,my daughter Daniella age 30 passed from Sudep , sudden unexpected death in epilepsy 24:01:24 , seizures were not controlled , appointments were rare this needs to stop and made a priority . 

Daniella suffered for 21 years and it was bad all through out , the injuries were horrific and the depression got bad . My other daughter has epilepsy since 13 years ago so as you can imagine I’m a wreck . 
Daniella was such a beautiful girl so outgoing and loving . 💜💜💜💜

Epilepsy Helpline

Opening Hours

Monday 9am-7:30pm

Tuesday 9am-4:00pm

Wednesday 9am-7:30pm

Thursday 9am-4:00pm

Friday 9am-4:00pm

Saturday 9am-12:30pm

Call 01494 601 400

Email helpline@epilepsysociety.org.uk