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H'E.A.R.O' Helping spread 'Epilepsy Awareness by Reaching Out'I HAVE SET UP THIS PROFILE FOR INFORMATION ABOUT EPILEPSY IN AN ENDEAVOUR TO SPREAD AWARENESS ABOUT THE CONDITION.THIS IS AN EPILEPSY INFORMATION PROFILE ONLY. I WILL BE UPDATING REGULARLY AND WILL ONLY BE INCLUDING RELIABLE INFORMATION.*********************************************SOM E FACTS ABOUT EPILEPSY Epilepsy is the tendency to have recurrent seizures.There are around 40 different types of seizure and a
person may have more than one type.
Epilepsy can affect anyone, at any age and from any walk of life.
456,000 or one in every 131 people in the UK has epilepsy.
Epilepsy is a neurological condition.
Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
One in 20 people will have a single seizure at some time in their life.
Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life.
Many people with epilepsy are still discriminated against due to ignorance about the condition.
Epilepsy is covered by the Disability Discrimination Act.
The vast majority of people with epilepsy can take part in the same activities as everyone else, with the help of simple safety measures where appropriate.
People who have been seizure free for a year can re-apply for their driving licence.INFORMATION TAKEN FROM
websiteEpilepsy helpline 0808 800 5050 (UK) [email protected]************************************ *****SEIZURE TYPES & FIRST AIDTonic-Clonic seizures What might happen The person loses consciousness, the body stiffens, then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely, due to irregular breathing. Loss of bladder and/or bowel control may occur. After a minute or two the jerking movements should stop and consciousness slowly returns.DO...
Protect the person from injury - (remove harmful objects from nearby)
Cushion their head
Look for an epilepsy identity card or identity jewellery
Aid breathing by gently placing them in the recovery position once the seizure has finished
Be calmly reassuring
Stay with the person until recovery is complete
DON'T...
Restrain the person
Put anything in the person’s mouth
Try to move the person unless they are in danger
Give the person anything to eat or drink until they are fully recovered
Attempt to bring them round
Call for an ambulance if...You believe it to be the person’s first seizure
The seizure continues for more than five minutes
One tonic-clonic seizure follows another without the person regaining consciousness between seizures
The person is injured during the seizure
What might happenSIMPLE PARTIAL SEIZURESTwitching, numbness, sweating, dizziness or nausea; disturbances to hearing, vision, smell or taste; a strong sense of deja vu.COMPLES PARTIAL SEIZURESPlucking at clothes, smacking lips, swallowing repeatedly or wandering around. The person is not aware of their surroundings or of what they are doing.ATONIC SEIZURESSudden loss of muscle control causing the person to fall to the ground. Recovery is quick.MYOCLONIC SEIZURESBrief forceful jerks which can affect the whole body or just part of it. The jerking could be severe enough to make the person fall.ABSENCE SEIZURESThe person may appear to be daydreaming or switching off. They are momentarily unconscious and totally unaware of what is happening around them.DO...Guide the person from danger
Look for an epilepsy identity card or identity jewellery
Stay with the person until recovery is complete
Be calmly reassuring
Explain anything that they may have missed
DON'T...Restrain the person
Act in a way that could frighten them, such as making abrupt movements or shouting at them
Assume the person is aware of what is happening, or what has happened
Give the person anything to eat or drink until they are fully recovered
Attempt to bring them round
Call for an ambulance if...One seizure follows another without the person regaining awareness between them
The person is injured during the seizure
You believe the person needs urgent medical attention
STATUS EPILEPTICUSStatus epilepticus is a term used to describe a single prolonged seizure, or a series of seizures which happen with no recovery in between. If the seizure or series of seizures lasts for more than thirty minutes, it is described as status epilepticus.
Any type of seizure may develop into status epilepticus but few do. It is a rare event. There are two kinds of status epilepticus. Tonic-clonic seizures lead to convulsive status epilepticus, which is the most serious form. The other type is non-convulsive status epilepticus and is associated with absence and complex partial seizures. Non-convulsive status epilepticus needs medical attention but is not an emergency in the same way as convulsive status epilepticus. Convulsive status epilepticus is a medical and neurological emergency and urgent medical treatment is needed to stop the seizures. Some children have medicine prescribed for this emergency, such as rectal diazepam or buccal midazolam. Both of these are relatively simple to administer by a properly trained and willing person. Training in how to administer the medication can often be organised by the local health authority, and should always be given by health professionals such as an epilepsy specialist doctor or nurse.ABOVE INFORMATION TAKEN FROM THE EPILEPSY ACTION WEBSITE
www.epilepsy.org.uk
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..********************************************'REAL PEOPLE - REAL LIVES'WHAT YOU READ BELOW WAS WRITTEN BY NINA (in top friends. IT IS VERY MOVING AND ALSO DISTURBING CONSIDERING WE ARE IN THE 21ST CENTURY. I HAVE HAD CONTACT WITH NINA FOR SOME TIME THROUGH MY SON WARREN'S PROFILE AND HAVE SHARED SOME INTERESTING CONVERSATIONS. IT HAS TAKEN REAL GUTS FOR NINA TO WRITE THIS ABOUT HER OWN EXPERIENCES OF EPILEPSY AND TO SHARE IT WITH THOSE VISITING HER PROFILE. WITH NINA'S PERMISSION I HAVE COPIED THE FOLLOWING FROM A BLOG SHE RECENTLY POSTED.
THIS IS NINA'S STORY 'Warts and All'
A radio station contacted me before Christmas and asked me to write 10 radio plays for them about disability. The theme being enabling disabled people. I was surprised they had contacted me, as I hadn't made it a well-known fact that I was disabled and no intention of letting anyone know . but then I met Deb's who ran the Epilepsy awareness page in honour of her son WARREN who died from SUDEP Sudden unexpected death in Epilepsy. Warren suffered from the same type of Epilepsy as me and when I saw Deb's campaigning tirelessly in her son's memory, I decided it's time to stop hiding.I started having seizures when I was 11 years old. I was having something called grand mal seizures about once every three months. I would just fall and shake without any warning. At the time it wasn't that big a deal, yeah it was confusing and the amount of injuries I had was continuous, but it was liveable. When I was 17, I went straight into training to be a nurse. I was having a great time yet over the next two years everything started to change. It increased to a seizure once a month, then once a week and it got to the point when it was every other day.Understandably I was kicked out of nursing, lost a lot of friends because I was now their patient and became nearly housebound. I was 19 years old, had just moved into my own place and it was tough. I had two or three friends who stuck around but the rest went off to live different lives, a life that I could never live and I would never hold that against them. Not now anyway.Five years on, I was 24. On really bad days I was having up to 3 grand mal seizures and over 20 Petite Mals (small seizures) a day. The only time I ever left the house in these five years was on Sunday's. My assigned day to be taken out by relatives was Sunday's so I would plan all week on what to I was going to wear and how I was going to do my hair. I loved Sunday's and still do.I was 7 days away from my 25th birthday when I got a phone call from my specialist saying they wanted to see me immediately. What a pain in the arse this was as it wasn't a Sunday and I didn't have a lift! When I got there and was told that they had decided to operate, my exact words were "operate on what?"8am the next day they came for me and I was prepped for surgery. I'd had 17 operations on my right hand because I have Polands Syndrome and was used to hospitals and surgery but this one was different, I was scared as they were actually going to remove some of my brain!My dad was my hero, he was the man, and the first thing I saw when I woke up after my op was my Dad sitting at the end of my bed crying. It's devastating to see your Dad cry! I thought I was dead and that's why he was crying. I wanted to shout to him that it was ok but I couldn't move. I tried so hard but during the operation I'd had a stroke. It took me over a year to learn how walk and talk properly and six months to learn how to read and write again.A year on and the good news was I had been seizure free for 384 days. I had moved back into my own house, was in a new relationship and had started a new job. Everything was fantastic but while watching a firework display it started again but it was different this time. I wasn't passing out and shaking anymore instead. I was having like an abnormal consciousness, memory loss, Hallucinations (visual, hearing, touch, smells), Deja Vu & Jamais Vu and nausea.I was diagnosed with Temporal Lobe Epilepsy resulting in partial seizures and complex partial seizures. I had too much brain damage to be able to fix it and I had a probable Hypothalamic Haematoma (brain tumour on my Hypothalamus) I was told to take the drugs and hope for the best.That was nine years ago. It took at least 4 years to get back to my old self again The trick was to surround myself with people who needed my help. I needed to feel useful again, to feel like I could mean something to someone, to not feel written off.I have about 15-20 seizures a day now. Sometimes you wouldn't notice but there are times when this condition is impossible to disguise and that's when the fight within you begins. Do you let everyone know or do you put it out of sight by putting yourself out of sight?You see it's not just about knowing facts with Epilepsy or any disability it's about a little understanding.Help Debbie raise Epilepsy awareness For Warren********************************************IF YOU HAVE ANY EXPERIENCES YOU WOULD LIKE TO SHARE WITH OTHER'S PLEASE FEEL FREE TO SEND THEM TO ME AND I WILL ADD THEM TO THIS PROFILE...

My Blog

SOME VERY USEFUL LINKS......

www.epilepsy.com .. .. Comprehensive, very readable information about all aspects of seizures, diagnosis, treatment and living with epilepsy. The site is US-based, so some information about medi...
Posted by on Sun, 06 Jul 2008 07:00:00 GMT

LONDON TRIATHLON 2008

PLEASE SUPPORT US IN THE LONDON TRIATHLON RELAY EVENT BY CLICKING ON THE LINK BELOW www.justgiving.com/debrahamer ....  
Posted by on Fri, 04 Jul 2008 18:37:00 GMT

SUDEP Sudden Expected Death in Epilepsy (know the risks)

There is some suggestion that some people may be more at risk then others. These may be people who: have poor control of their seizures have generalised seizures during their sleep have a learning...
Posted by on Sun, 15 Jun 2008 16:10:00 GMT

SEIZURE TYPES.......(links)

FOR THOSE OF YOU WHO HAVE CONTACTED ME REGARDS DIFFERENT TYPES OF SEIZURES I THOUGHT IT BEST TO PROVIDE YOU WITH A LINK.  THIS IS FROM THE EPILEPSY SITE AND SHOULD BE ABLE TO ANSWER SOM...
Posted by on Fri, 06 Jun 2008 14:01:00 GMT

THE NEED TO SPREAD SUDEP AWARENESS IS NOW..........LINK.

The need to spread SUDEP (Sudden Unexpected Death in Epilepsy) awareness has never been so important. Please visit the link below and sign petition. http://petitions.pm.gov.uk/-SUDEP/   &nbs...
Posted by on Wed, 28 May 2008 10:56:00 GMT

EPILEPSY RESEARCH NEWSLETTER (MAY 2008) OUT NOW.........

www.epilepsyresearch.org.uk
Posted by on Sun, 25 May 2008 15:44:00 GMT

EPILEPSY AWARENESS WEEK 18TH - 25TH MAY 2008 LINKS INCLUDED

http://www.epilepsyinfo.co.uk/index.php   http://www.epilepsyresearch.org.uk/news/0804enews/lobby08.ht m The above link includes a sample letter to send to your local MP or local politician. ...
Posted by on Tue, 20 May 2008 11:39:00 GMT

PENPAL SYSTEM

Dear Everyone, Kristen from USA Ready Set Walk in top friends and I are uniting to make the Pen Pal System a wonderful and overall great experience for you. With all the members that I have and t...
Posted by on Mon, 05 May 2008 20:12:00 GMT

NEWSPAPER ARTICLE

NEWSPAPER ARTICLE How the internet community helped a grieving mum Debbie Hamer, with a picture of her son Warren, who died of epilepsy. JW080408cd .. .. .. « Previous « Previous Next »...
Posted by on Sat, 12 Apr 2008 06:07:00 GMT

EPILEPSY ACTION NEWS (February 2008)

First ever UK epilepsy care plan announced by Welsh Assembly New plans to improve care for thousands of people in Wales with epilepsy have been announced by Welsh Assembly Government health minister E...
Posted by on Fri, 21 Mar 2008 12:43:00 GMT