Young And Dynamic Epilepsy Advocate

Amanda is 17 years old. She has epilepsy for the past 5 years and she handles her condition with great courage and determination. She is a fine example of a teenager with epilepsy who does not allow seizures to affect her life in any way. She has a very inspiring blog about her condition and would love everyone to visit her and share their views and comments with her.

( Below is the introduction of her blog )

Dear Readers,

This blog is about my personal struggle and experiences with Epilepsy over the last 5 years. I will be writing to you about what I am feeling each day, and showing how Epilepsy affects my life. I have currently been implanted with a VNS (Vagus Nerve Stimulator). Many people are skeptical and curious about this form of treatment, so I will be blogging with all the facts and side effects that I experience along my way to hopefully being seizure free. I see my Epilepsy as a gift from God, even when it's unbearable. I thank God everyday for blessing me with this disease. God gave me Epilepsy so that I may share it with the world. People need to be informed on what Epilepsy is and how it works. Epilepsy isn't just "a seizure disorder"... it becomes a lifestyle for those affected by it. I hope that you can learn at least one thing from my blog and be able to share it with others. Getting the facts is just one small thing you can to to help Epileptics around the world break the chains of Epilepsy.

(www.mandykrzywonski.blogspot.com)

(Having come to know Amanda and her academic achievements, I had her supportive co operation to write a short article to encourage epileptic students to move on with their studies despite the difficulties they face daily with having epilepsy. Below is her motivating and encouraging write up. Read, be inspired and uplifted - Serene)

"The unfortunate things about epilepsy is that many people let it stop their lives, and often times give up doing the things they love or things that they need to do. Many young students tend to feel as if they are too sick to keep up their studies, especially if epilepsy prevents them from being in school full time. I was and still am one of those students. Your education is the foundation that you will build the rest of your life on it and it is vital to have a strong foundation. Making it through those 4 years of high school or even college can seem impossible when you suffer from seizures.

I personally know a person who actually dropped out of school altogether because they felt their seizures were too much to deal with on top of school. If you look around your community you will find that many schools have programs for hospital bound and ill children living at home. You can have shorter school days or be taught at home with more time to finish your work at your own pace. Some schools are even willing to reduce the amount of work that a student must finish in order to graduate.

I took part in the Northside Independent School District Home Bound Program in San Antonio, Texas and it has benefited me so much. I am also starting to do some classes online at a local college to help myself move forward. Just because it's summer time does not mean that there aren't any ways to move forward in school. It is important to push yourself as far as you can each day because no matter how far away your goals may seem, they are never too far.

I am currently in my last year of high school and I never thought I would make it this far. Thanks to my home bound program I got plenty of rest and I was able to complete my classes in much better health. I encourage all students to use all resources made available for them in their communities because our future depends on what we do now as young students. " Don't Let Epilepsy Rule Your Life! " - Amanda.







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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








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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 : www.thisischeshire.co.uk









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DOMINO EFFECT OF PASSING IT AROUND

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.







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EPILEPSY FOUNDATION OF VICTORIA, AUSTRALIA


Four of the five members of the Walker family have epilepsy, and the youngest son Ronan also has severe developmental delay. When the Walkers went to their first epilepsy family camp, their mother Christine says it was ‘just extraordinary’. They didn’t have to apologise that Ronan was wearing a helmet to protect his head in a tonic clonic seizure, or worry in case any of the family had a seizure. They felt immediate acceptance and came away feeling part of a network of families who know what it is like to live with epilepsy.

Your donation makes our services possible, so I urge you to donate to our June Appeal. Your contribution – as much as you can afford – provides the resources that makes these services possible: camps for families, individual and family counselling services, education and training, resources and publications, research, support groups and community education.

Please make your donation and really make a difference to the lives of families like the Walker’s who ask nothing more than opportunity for their children, and understanding from the community.

Dear Ms Yin: My sincere thanks for your past support of the work of the Epilepsy Foundation of Victoria. Your generosity has made it possible for us to assist many hundreds of Victorian families and individuals whose lives are complicated by epilepsy and seizures. As we launch our major June Appeal, I am taking the liberty of asking you to commit even more generosity to our work. To make your giving easier, you can DONATE HERE securely and confidently, and help make the lives of families like the Walker's a little easier. Four of the five members of the Walker family have epilepsy, and the youngest son Ronan also has severe developmental delay. When the Walkers went on their first epilepsy family camp, their mother Christine says it was 'just extraordinary.' They didn't have to apologise that Ronan was wearing a helmet to protect his head in a tonic clonic seizure or worry in case any of the family had a seizure. They felt immediate acceptance and came away feeling part of a network of families who know what it is like to live with epilepsy. Your donation makes our services possible, so I urge you to donate to our June Appeal now. Your contribution — provides the resources that makes these services possible: camps for families, individuals and family counseling services, education and training, resources and publications, research, support groups and community education. Please make your donation today and really make a difference to the lives of families like the Walkers who ask nothing more than opportunity for their children, and understanding from the community. Thank you — we really appreciate your support. Yours sincerely
	Jeremy Maxwell For the Epilepsy Foundation of Victoria
	PS To read the full story of the Walker family, go to our website www.epinet.org.au. Please click here to make your secure donation,or telephone 03 9805 9111, and you will be assured that your donation will be tax deductible in this financial year.

TRAVEL SMART

WHEEL POWER
By ANTHONY THANASAYAN

SO you like to travel ... and you have epilepsy. That is no excuse for anyone to stay at home and avoid going to new places and meeting new people.

Serene Low, 49, from Bangsar, Kuala Lumpur, ought to know about these things. She has had nearly 100 episodes of epileptic attacks since she was a child. But that didn’t stop Serene and her family from visiting China last December.

A little slip-up made the trip an unforgettable nightmare for them.

“We were all excited about our holiday which we had been planning for months,” said Serene. “I went through our checklist twice to ensure that we had everything: passports, luggage labels, travelling itinerary, etc. “However, after breakfast on the plane, I realised to my horror that I had forgotten to bring my anti-epilepsy medication.”

All she could find was a bottle of new drug which she had never taken before. The drug was given to Serene by her neurologist who cautioned her to use it judiciously as a sudden change of medication could result in adverse side effects.

“I have not had any fits for over four years due to my daily medication. I was terrified that I might get one or several seizure attacks in China,” said Serene, an advocate for people with epilepsy. “I had no choice but to take the new drug to avoid having an attack,” said Serene.

Then it happened on the second last day of Serene’s holiday. Serene fell onto the ground at a tourist spot. Fortunately, her husband and her son were with her when it happened. They protected her head with her winter jacket and waited until the seizure had run its course. When Serene came to, she was taken to a nearby coffeeshop to rest whilst a small crowd of curious onlookers watched the whole drama. Serene later returned to her hotel room where she managed to get a good night’s rest.

Serene is thankful that she has a supportive family who are there for her all the time. Now all the wiser, Serene would like to offer the following tips to anyone who has epilepsy and likes to travel:

> Start first with your anti-epileptic medication before packing any item. And make sure you pack the right medication.

> Make an effort to recheck if someone has packed your medication for you.

> Never pack your medication into one bag to avoid not having them if your luggage gets misplaced at the airport. Have some available in your handbag and backpack as well for quick access. Carry extras in case you need them.

> Check the expiry dates of all medication.

> Always carry an identification card indicating you are a person with epilepsy, details of the type of medication you take, including dosage, who your doctor is, and important names and phone numbers to call in an emergency.

> Inform the travel guide that you are person with epilepsy so that he will be prepared to help you during an emergency.

> Mingle and get to know the people you are travelling with as a group. Share some simple information about epilepsy with them, particularly on how to help someone during a seizure.

> Stay close to your friends and family who are travelling with you.

> Keep a safe distance away from lakes, streams, fountains or waterfalls to avoid drowning during a seizure.

> Encourage your family or friends to take a video or photograph you during an attack as this provides useful material for your neurologist in treating you.

MAKING A DIFFERENCE

My blogger friend in UK told me not too long ago that he will highlight epilepsy awareness in his blog. Not only did he highlight epilepsy awareness, he also fundraised for epilepsy research by raising funds through his blog. His blog speaks volumes of himself and his philosophy in life.

My friend is Paul and he blogs as "magicdarts". Paul has raised a total of 75 pounds this month out of which 20 pounds have been allocated for www.epilepsyresearch.org.uk.

(What Paul has to say about himself)

"I'm a 39 year old family man from the East of England. Like my profile picture, the way I like to live my life is with a big smile on my face wherever possible. As of March 2010 I've decided to rename this blog Make a Difference and am going to focus all my efforts on sharing inspiring stories, and raising awareness and funds for charities that are closest to my heart - I hope you will come along for the journey!"

Please visit Paul at www.magicdartsblog.blogspot.com to read more about this fabulous, kind, warm, caring and charitable gentleman who is a fine example for anyone who wants to follow in his footsteps.

Ps. Please note that Paul also raises funds for other worthy causes. If you have any worthy personal cause/s close to your heart that you require assistance from Paul, please do not hesitate to inform Paul about it. He will be happiest to hear from you.