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Dad raises awareness of Sudden Unexpected Death in Epilepsy

A father who tragically lost his young son to Sudden Unexpected Death in Epilepsy (SUDEP) last year is urging families to be aware of the risk factors around epilepsy - and what they can do to minimise them.

Abdul Rahim is campaigning to raise awareness of Sudden Unexpected Death in Epilepsy following the tragic death of young Ismaeel earlier this year
Dad raises awareness of Sudden Unexpected Death in Epilepsy

Abdul Rahim is campaigning to raise awareness of Sudden Unexpected Death in Epilepsy following the tragic death of young Ismaeel earlier this year
Five year old Ismaeel

Abdul Rahim is campaigning to raise awareness of Sudden Unexpected Death in Epilepsy following the tragic death of young Ismaeel earlier this year
Five year old Ismaeel

SUDEP is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. There are more than 1,000 epilepsy related deaths every year, with around half of these due to SUDEP.

While its cause is not yet known, SUDEP is linked to seizures and researchers have identified key factors that can increase risk and steps that can be taken to reduce them.

Abdul Rahim and his wife Rina were not aware of the risks of SUDEP until after 5 year old Ismaeel's death when they contacted the charity SUDEP Action.

Now they are supporting SUDEP Action Day tomorrow (Tuesday 23 October, 2018) in a bid to raising awareness of SUDEP, help other people with epilepsy and their families, and prevent more epilepsy related deaths.

Abdul, a neighbourhood safety coordinator for City of Wolverhampton Council, said: "Ismaeel started to have seizures when he was just 1 and a half years old and we were told at the time it was febrile seizures, not epilepsy.

"Towards the end of his life, Ismaeel's seizures became more frequent and severe, which we now know is a big indicator of SUDEP.

"We were sadly not made aware of epilepsy related risks until after Ismaeel's death. If we had known we could have taken measures to minimise them.

"I just hope that by sharing our story, more people will be aware of the risk factors, especially clinicians and GPs and families living with epilepsy."

Abdul is joining the council in marking SUDEP Action Day tomorrow and will be hosting an information stand at the Civic Centre from 10am to 2pm.

Councillor Hazel Malcolm, City of Wolverhampton Council Cabinet Member for Health and Wellbeing, said "Epilepsy, like other long term conditions such as asthma or diabetes, comes with certain risks. If left unchecked these can become very serious; so knowing about them, and understanding how to reduce them, could help save hundreds of lives every year.

"Abdul is incredibly brave for sharing his personal story and I hope this helps to raise much needed awareness around Sudden Unexpected Death in Epilepsy. If you or a loved one are affected by epilepsy, or are a health professional who supports families living with epilepsy, I would urge you to contact SUDEP Action and find out what you can do to minimise epilepsy related risks."

Now in its fifth year, SUDEP Action Day aims to raise awareness worldwide of sudden unexpected death in epilepsy. This year, SUDEP Action is encouraging people to #ACT: Ask questions, Communicate and Take action.

Steps people can take to minimise the risk of SUDEP include:

  • taking your medication regularly and reliably
  • speaking to your doctor before making any changes to your medication
  • discussing any lifestyle changes such as having a baby or going to university with your doctor
  • avoiding excess alcohol consumption and using recreational drugs
  • making sure you have regular reviews
  • telling your doctor if your seizures have changed
  • if your medication isn't working, don't settle for continued seizures. Ask your doctor what other options there might be

The risk of SUDEP varies from person to person and not everyone with epilepsy is at risk, so it is important you discuss your risk with health professionals.

For more information about Sudden Unexpected Death in Epilepsy, please visit SUDEP Action or call 01235 772850. For more information about SUDEP Action Day, visit SUDEP Action Day.

  • released: Monday 22 October, 2018