Monday, June 21, 2010

Epilepsy? There's an app for that

A leading UK medical charity has turned to the iPhone to make young people more epilepsy aware.

The National Society for Epilepsy (NSE) has launched the app, which promises to offer essential first aid information, including a step by step guide to the recovery position, along with information about epilepsy.

"Epilepsy is the UK's most common serious neurological condition and it is likely that someone, at some time, might need to help a person having a seizure," said NSE communications manager Amanda Cleaver. "Epilepsy is a very complex condition which is surrounded by myths and misconceptions. Shockingly some people still believe you should hold a person down during a convulsive seizure and put a spoon in their mouth. There are around 40 different types of seizure. Not all seizures involve losing consciousness or convulsions. Knowing how to help someone can help reduce misconceptions."

"This app, the first of its kind for epilepsy, has been developed after consultation with students and we hope it will have particular appeal to young people. The app, Epilepsy Guide for iPhone, iPad and iPod touch is released in time for National Epilepsy Week, which runs between 13-19 June. As the theme of the awareness week this year is epilepsy and young people we thought it was an appropriate time to launch the app," adds Amanda Cleaver. NSE is now looking at ways of further developing the app as a tool for seizure and medication management.

Available from the Apple iTunes App Store, Epilepsy Guide is free and requires the iPhone 3.0 Software Update or later.

NSE offers the following Epilepsy first aid check list:

Keep calm
Check your watch to note the time
Cushion the person's head
Put them into the recovery position after the convulsions (shaking) stop
Stay with them until they have recovered and their breathing has gone back to normal
If the seizure doesn't stop after 5 minutes, call for an ambulance
Don't hold them down
Don't put anything in their mouth
Don't move them unless they are in direct danger


Sunday, June 13, 2010

How family of epilepsy sufferer cope with five fits a day

Mia Loudon with mum Paula and big sister Amy

FIVE seizures a day are just one of the symptoms a Cinnamon Brow mum has to manage for her disabled daughter, who has an extremely rare brain disorder and epilepsy.

Six-year-old Mia Loudon was diagnosed with epilepsy aged two weeks and used to suffer from 15 to 20 fits each day. She had to have her stomach sewn aged two because each seizure led to her vomiting and choking, meaning she is now fed through a peg in her abdomen. She was fitted with a nerve stimulator, at the age of three Mum Paula, of Perth Close, said: “Mia has good and bad days and all of them are very different. She needs 24-hour care because epilepsy is so unpredictable.

“Having Mia’s stomach sewn was a big decision as we knew we’d never be able to feed her again. It was so sad because she used to really like eating.” To add to an already complex condition Mia, who goes to Fox Wood School, in Birchwood, also has CDKL5, which is associated with Rett syndrome, a disorder affecting mainly girls and women.

Although present at birth Rett usually goes undetected until regression occurs at about 12 months and children lose acquired skills. Those with Rett have profound physical and learning disabilities and are totally reliant on others for support throughout their lives.

Paula, who is married to 41-year-old Rob, added: “Not much was known about CDKL5 when Mia was diagnosed in 2005.

“She was only the second child in this country to have it and the 17th in the world. Having this makes the epilepsy very hard to control.”

Paula, who had to give up her job as a PA to take care of Mia, has another daughter Amy, aged nine, who has proved invaluable in helping take care of her little sister. Paula said: “Amy idolises Mia and can deal with a seizure. She has seen thousands of them but it’s awful to see her cry when Mia has a particularly disturbing one.”

The 35-year-old has built up a support network for dealing with CDLK5 which can be found by typing the condition into Yahoo.

source :


Friday, June 11, 2010


Every time I attend an epilepsy congress I never fail to grab extra copies of epilepsy pamphlets, newsletters, books or dvds if they are available. I have a limited array of epilepsy materials and I only give these to people who wants and appreciates it.

My friend, Lynn, emailed me last month to request for a copy of an epilepsy awareness dvd. She wanted to watch the dvd with her yoga and meditation class members. Apparently, their master had taught them to insert an object into an epileptic's mouth during a seizure. I was more than happy to offer her a copy. From my past experiences of promoting epilepsy awareness I find family members and extended family members, relatives and extended relatives, friends and friends of theirs to be a great source of network of people to be connected and work with.

Lynn, had in the past organised two epilepsy talks for me to share about epilepsy. Jack had organised for me to give two epilepsy talks in colleges. My aunties and sisters had passed words around to their friends about my epilepsy advocacy. Mary got her newspaper columnist friend to interview me in person and later publish some of my epilepsy write ups in the local paper.

So, if you have in hand some good epilepsy materials, circulate it around. Do not just keep it. Make epilepsy awareness a domino effect among the people you know.