ICE File Template

Here's something we have put together that you may find useful:

 

Simply click the little menu icon on the slide bar. Either print to PDF and fill in your relevant details to give to a carer/childminder/teacher etc or Download a copy to use as a template and add or take away the things that are not relevant. Another use is to save a document on a usb necklace or bracelet of the person with epilepsy so all the info is there ready to be viewed at an appointment.

SJS also known as Stevens-Johnson Syndrome ... KNOW THE SIGNS!!!

Recognition of the early symptoms of SJS and prompt medical attention are the most invaluable tools in minimizing the possible long-term effects SJS may have on its victims.

Stevens-Johnson Syndrome manifests in one of four ways: eruptions of the skin, eruptions of the mucous membranes, eruptions of both, and/or peeling of the skin in sheets. Skin lesions appear as a severe rash, with fluid-filled bubbles and blisters that are often round, bubble-shaped or target-shaped. In the TEN form of the disease (Toxic Epidermal Necrolysis), large areas of the epidermis (skin) peel off in sheets.

SIGNS TO LOOK OUT FOR:

• Painful and/or itching skin lesions (flat, raised and/or fluid-filled)Skin blisters and/or bubbles (also known as bullae or vesicles)
• Target-shaped lesions in a circle, bulls-eye or target pattern
• Skin condition usually located on legs, arms, hands, palms and feet, usually not on the torso
• Mucous membrane lesions, bumps, blisters, swelling
• Mouth rash & blisters
• Throat rash & blisters
• Anal rash & blisters
• Genital rash & blisters
• Swollen, oozing, blistered eyes (Conjunctival rash and blisters)
• Persistent fever
• Blisters in mouth, eyes, ears, nose, genital area
• Swelling of eyelids, red eyes
• Conjunctivitis
• Flu-like symptoms
• Recent history of having taken a prescription or over the counter medication

• 
  
Target lesions are not always seen in SJS!
If you have 2 or more of the signs seek medical attention within 24 hours

Purple Up For Purple Day

What do you think of when you think of the colour purple?


Purple Rain, Purple Haze or Lucky Heather maybe?


It means much more to many people, as pink is to breast cancer, purple is to epilepsy.

Purple Day

A nine year old girl called Megan Cassidy from Canada even went so far as to organize a purple day.  Which since it began just a few short years ago has now become a global day of awareness.


That day falls on March the 26th each year.


People around the world will do many weird and wonderful things this March the 26th, many school children will wear purple clothes to school, many creative cooks will hold purple cake sales, many boxes of violet hair dye will be sold!
If  you are going to go purple for your favourite epilepsy charity we would like to hear about it!




This year Mimic Art have created a wonderful piece of  work entitled 'Absence Eyes.'


It is special for two reasons, the first being that it is the 100th work for Mimic Art and secondly the creator of the painting has a very personal reason for wanting it to coincide with purple day.  Martin Mchale aka Mimic Art has a son with epilepsy.  A very brave young man who has had to deal with much in his life and his mum Sarah Mchale told me about Jake.


"Jake has suffered with seizures since he was six months old.  He was diagnosed with Rasmussens Encephalitis at the age of  three.  By the age of five he was having as many as 200 seizures each and every day.  The decision was made to undergo brain surgery, this particular procedure was a right hemispherectomy" (the complete removal of half of the brain.)


Jake is almost 21 now and still experiences seizures everyday but due to advances in medication the seizures have decreased. Everything that has been experienced by Jake in his life has been witnessed through these eyes:

Absence Eyes 

Everyone effected by epilepsy has their own story to tell, so what ever you do this March 26th, purple up for purple day.

Be cool, don't gawp, go help!

Hey you! welcome!


What would you do if you witnessed as seizure? Here's what we would do:


Be cool, dont gawp, go help!!


Make them safe and protect from injury
(obvious reason.)


Don't restrain!!! Dont stick anything in their mouth!!!
(like the older generation were taught.)


After the seizure, move them on to their side.

Tilt their head back and check they are breathing.
If not, call 999. If they are, sit with them and wait till
it's over.  


Offer to help them home or call someone who will


Be cool!! You can do it!!


If you are effected by epilepsy, I apologies for teaching you how to suck eggs!! For those of you who dont know what to do, this advice is for one specific type of seizure: Tonic-clonic (used to be known as Grand Mal. Its as old as tied dyed tee's and so NOT cool)


Artwork by Stephen Downey