Epilepsy cam­paign

Mum who lost son backs drive by char­ity SUDEP

West Lothian Courier - - News - Deb­bie Hall

A West Loth­ian woman who lost her son to epilepsy is back­ing a cam­paign to pre­vent lives be­ing cut short by the dis­ease.

Chris Jeans is back­ing the four-year na­tional drive by Sud­den Un­ex­pected Death in Epilepsy (SUDEP) Ac­tion.

She lost her son Stephen to SUDEP in 2010 when he was just 38 years old.

SUDEP Ac­tion’s event took place ear­lier this month, with the aim of rais­ing over £1 mil­lion over the next four years to tackle th­ese deaths.

The Prevent21 Ap­peal is ded­i­cated to tak­ing nec­es­sary ac­tion to re­duce risk from seizures and from Sud­den Un­ex­pected Death in Epilepsy (SUDEP).

Epilepsy claims the lives of at least 21 peo­ple each week in the UK, mostly in the young and healthy, leav­ing fam­i­lies bro­ken and search­ing for an­swers.

Chris, from Mid Calder, who is de­vel­op­ment of­fi­cer for SUDEP Ac­tion Scot­land, said: “We were never told about SUDEP, had never heard of it be­fore Steve died.

“The re­al­i­sa­tion he could po­ten­tially have been saved is very hard to live with. This ap­peal will bring this to the fore.

“It’s too late for Steve but we might help to pre­vent an­other death and an­other fam­ily be­ing left dev­as­tated.”

In the past 21 years alone, over 21,000 peo­ple with epilepsy have died sud­denly. A fig­ure the char­ity be­lieves is likely to be un­der­es­ti­mated.

This ur­gent ap­peal is cam­paign­ing to bring this shock­ing is­sue out of the shad­ows and to the pub­lic’s at­ten­tion.

They hope that by call­ing for a change in at­ti­tude, cul­ture, and ac­tion to­wards epilepsy from health pro­fes­sion­als, peo­ple liv­ing with the con­di­tion and their fam­i­lies – lives could be saved.

SUDEP Ac­tion is the world leader in tak­ing ac­tion against epilepsy deaths, in­clud­ing SUDEP.

Set up by Jane Hanna OBE in 1996 fol­low­ing the death of her then part­ner Alan, she vowed to help pre­vent the need­less lives lost sud­denly each year, which could be avoided with re­search, im­proved ed­u­ca­tion and care.

Jane said: “While this fight is not new, we do now know that many of th­ese sud­den deaths can ac­tu­ally be avoided, if peo­ple were be­ing told about their risks.

“We’re work­ing tire­lessly to help peo­ple with epilepsy, their fam­i­lies and clin­i­cians, to do what they can to re­duce risks now.

“Our work has mostly been funded by those af­fected by a death, but we do now need ur­gent sup­port from the pub­lic.

“By join­ing our fight through the Prevent21 ap­peal, we can move ahead to stop th­ese sud­den and tragic young deaths.”

More in­for­ma­tion about the ap­peal and how to get in­volved can be found at www.sudep.org/prevent21.

If you have been be­reaved by epilepsy or would like more in­for­ma­tion about how to re­duce epilepsy risks, visit www. sudep. org or call 01235 772852.

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.