SUDEP (Sudden Unexpected Death In Epilepsy)

Mum sacrificed her life for baby

Mar 20 2008 By Catherine Lillington

A YOUNG Birmingham mum gave her life for the baby she would only have for two weeks.

Katy Rose died after she decided to stop taking her epilepsy medication without realising the full risk her action carried, an inquest heard. The 21-year-old, of Windwood Way, Smiths Wood, collapsed at her flat two weeks after her daughter Keziah was born. Pathologist Dr Adrian Yoong told the inquest, held at Sutton Coldfield Town Hall, yesterday, Katy died from sudden unexpected death in epilepsy, known as SUDEP.

Katy's family believe, had she known, she would have started back on her drugs. Katy, who was diagnosed with epilepsy in 1991, stopped taking her drugs 15 weeks into her pregnancy because she feared what the effects might be on her unborn child.

Her mum Sue said: "Katy was aware full well that not taking medication could increase the chances and risk of her having a seizure. She knew that but, having discussed it and seen her senior obstetrician, it was an informed risk she was taking. Had she known about the potential for SUDEP she would have at least known, started taking drugs again and reduce the risk to herself."

The family said Katy had longed for her baby and was excited at becoming a mother. The former pupil at Park Hall Secondary School in Castle Bromwich had found out before the birth she was to have a little girl and chose the name Keziah from the Hebrew language.

Sue, of Springfield Road, Castle Bromwich, said: "Keziah was Katy's first child and a very much wanted child as well. Katy was the happiest she had been in a long time in the two weeks she had got her." Katy was taken to Heartlands Hospital where doctors lost a battle to save her life, on September 28 last year. Just a fortnight earlier Keziah was born at the same hospital, weighing 7lbs 1oz.

Sue said Katy, who trained in health and beauty studies, had a problem-free delivery and Keziah's dad Marlon was by her side. Katy's dad Geoff said: "Katy was so happy one minute and gone the next."

Sue added: "We're not looking for any other answers for Katy. We're looking for other people to be as best informed as they can be to reduce this risk. I know a lot of people with epilepsy and none of them have ever heard of SUDEP. We'd never heard of it. As far as I'm concerned epilepsy is a hidden illness, that people don't talk about. We should be aware of everything."

Source: www.birminghammail.net

( My heartfelt and deepest condolence to the family members of Katy )

Sudden Unexpected Death in Epilepsy (SUDEP)

Introduction

We made the decision to write this information because we have been told, by the relatives and friends of people who died from SUDEP, that no one had ever told them that this could happen. By making this information available, we hope to raise people’s awareness of SUDEP, so that fewer people will be affected in the future.

If you have any further questions after reading this, you could make an appointment with your doctor or epilepsy nurse to talk your concerns through. You are also welcome to speak with our trained advisers on the Epilepsy Helpline or to send an email to the helpline to discuss any concerns you have.

What is Sudden Unexpected Death in Epilepsy (SUDEP)?

If a person with epilepsy dies suddenly and no obvious cause can be found after a post mortem examination has been carried out, it is called SUDEP.

How common is SUDEP?

It is difficult to know exactly how many people with epilepsy die each year, but it is estimated that about 500 people a year die of SUDEP in the UK.

What causes SUDEP?

The true answer is, we don’t know. Some studies have suggested that the part of the brain that controls breathing may be affected. This could cause the person to stop breathing during a tonic-clonic seizure. For most people, the breathing would start again once the seizure ends. Unfortunately, this has not happened to the people who have died from SUDEP.

We don’t know yet whether these things happen because the person with epilepsy already has a weakness to their heart or lungs, or whether it is related to the epilepsy itself.

Who is at risk of SUDEP?

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 disability
• are young adult males
• are not taking their prescribed antiepileptic medication
• are having frequent or sudden changes to their antiepileptic medication.

Reducing the risk of SUDEP

The following suggestions may help you to reduce the risk of SUDEP.

• If your seizures are not well controlled, you could ask to be referred to an epilepsy specialist (secondary care – usually local) for your epilepsy and medication to be re-assessed. This would also give you the chance to discuss with your specialist whether any other treatment options would help to control your seizures.

• Ask for a referral to a specialist epilepsy clinic (tertiary care – may be out of your area). Some specialist epilepsy centres take part in trials of new drugs.

• Make sure that you never run out of your prescription medication.

• Never make changes to or stop your medication without talking to your doctor first.

If you are close to a person with epilepsy, you may be able to reduce their risk of SUDEP by knowing that:

• many of the people who have died from SUDEP have been alone, although not everyone was. So, it would be good to stay with the person who is having a seizure for at least 15 or 20 minutes after the seizure has ended.

• Stimulating a person, for example moving their body or limbs can encourage breathing to restart. If you are caring for a person who has had a tonic-clonic seizure, put them on their side, in the recovery position, when the seizure is over.

If you need support following the death of someone from SUDEP, you could contact one of the following organisations.

Epilepsy Bereaved
PO Box 112, Wantage, Oxon OX12 8XT
Tel: 01235 772 852 (A message can be left on the answer machine and a befriender will call back, or write.)
epilepsybereaved@dial.pipex.com

This is a charity set up by people who have been affected by SUDEP to offer support and information for other people affected by SUDEP. Epilepsy Bereaved takes part in research into the causes of SUDEP.

Compassionate Friends
53 North Street, Bristol BS3 1EN
Tel: 0845 123 2304
info@tcf.org.uk

This is self-help and befriending organisation of parents whose child, of any age, has died from any cause.

Cruse - Bereavement Care
Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR
Helpline: 0870 167 1677
Young person’s Helpline: 0808 808 1677
helpline@crusebereavementcare.org.uk

This is a counselling service run by trained people who help people with the emotional and practical problems of losing a relative or friend. They have a network of local branches.

Information updated December 2007

Source: http://www.epilepsy.org.uk/info/sudep.html

SEEK AND I SHALL PROVIDE

Sinful in nature I have always sought God in every aspects of my life - forgiveness, blessings, hopes, faithfulness, wisdom, thanksgiving, peace, love, grace and etc. The result of seeking God makes me closer to God, more serene and forgiving, a nourished soul wanting to know more about God, giving thanks in everything and appreciative in every way. It is very important to have God in our lives as He is a living God.

To describe about how I got myself started in doing epilepsy awareness work it had to be God's promptings and Epilepsy Foundation of Victoria (Australia). I asked and I received.

I first visited EFV in the year 2002. The person I first met was Pauline Brockett. She is the librarian in EFV. She is a very pleasant, hospitable and welcoming person (just like my aunt). Having liased with her and a tour in the Foundation she introduced me to Russell Pollard who is the CEO of EFV. My meeting up with these two people was a special encounter. They heard of my intentions to help raise and do epilepsy awareness work in Malaysia. Without any hesitation they provided me valuable and informative materials such as posters, books, phamplets, dvds, newspaper articles and etc. I sought and EFV provided. Needless to say I was overwhelmed by EFV's generosity and substantial help which played a backbone role in my seven years of epilepsy awareness work in Malaysia.

I recently met up with Pauline again. This time she had introduced me to Jeremy Maxwell, Development Manager in EFV. I had a pleasant and memorable moment meeting up with both of them. Visiting EFV is like going to my second home in Australia. The people here are so warm, friendly and helpful. Such qualities in them show their true passion and deep sense of commitment in serving people with epilepsy (PWE) not just in their country but also in other countries.

It is truly not enough to just mention names of people I had come to know in EFV. It is my great honor to show everyone pictures of who these wonderful people are.

Outside EFV

Going through epilepsy materials with Pauline

In God I walk hand in hand. In EFV I continue to foster and strengthen my friendship with the people I know. I am more determined then before to carry on with my epilepsy awareness work. My heartfelt thanks to EFV again for providing me with more epilepsy materials to be used at my epilepsy awareness booth. Together we will make great positive differences in our societies.

Palm Sunday

Palm Sunday is the sixth and last Sunday of Lent and the beginning of Holy Week.

The date for Palm Sunday in 2008 is 16 March

Holy Week is the week before Easter, commemorating events in the last days of Jesus' life on Earth. It begins on Palm Sunday and ends on Easter Monday.

Special Days in Holy Week.

• Palm Sunday the day Jesus arrived in Jerusalem.
• Holy Thursday (Maundy Thursday), Last Supper and the betrayal by Judas.
• Good Friday (Holy Friday), the arrest, trial, crucifixion, death and burial of Jesus Christ.
• Holy Saturday, the Sabbath on which Jesus rested in the grave.

Palm Sunday is a time of celebration as well as sadness because Jesus died on a cross less than a week after he had entered Jerusalem.

What is Palm Sunday?

The Sunday before Easter is known as Palm Sunday. It celebrates Jesus' arrival in Jerusalem for the Jewish festival of Passover. Great crowds of people lined the streets waving palm branches to welcome him. The people were very excited. They spread branches on the road – and even laid down their clothes. They shouted 'Hosanna!' which means 'Save us Now!'

Why is it called Palm Sunday?

The Sunday before Easter is called Palm Sunday because the crowds waved palm branches as they followed Jesus' procession into Jerusalem.

Why did Jesus go to Jerusalem?

It was the time of the Jewish feast of Passover. Many Jews travelled to Jerusalem to celebrate this feast together.

What happens on Palm Sunday in England?

On Palm Sunday, children are given crosses made from single palm leaves. Traditionally, many churches will have a procession in or around the church while people sing songs of praise and wave palm leaves. This is to help them imagine what Jesus' entry into Jerusalem might have been like.

Pax Cakes

In some English churches small buns called pax cakes (symbolic of peace and goodwill) are given to the congregation as they leave after a Palm Sunday service.

Palm Sunday also has the nick name 'Fig Sunday' because Christ had wanted to eat some when travelling to Jerusalem (Mark 11: 12-14). Figs were once traditionally eaten on this day.

What happens to any Palm crosses left over?

Any left over Palm Crosses are kept and burned to make ashes for next years Ash Wednesday services (see Ash Wednesday )

Source: http://www.woodlands-junior.kent.sch.uk/customs/easter/palmsunday.htm

Lighting the Falls lavender

Epilepsy awareness campaign brightens Niagara

NIAGARA FALLS

Niagara's natural wonder will be bathed in lavender light tonight to help raise awareness of epilepsy.

Epilepsy Niagara has launched its annual campaign, Epilepsy Awareness Month, for the month of March in an effort to raise awareness about what epilepsy is and how it affects peoples’ lives. Lighting the Falls with lavender tonight is the main symbolic event.

Many people living with epilepsy are confronted with myths and misconceptions of their disorder, says a release from Epilepsy Niagara.

Epilepsy is not a psychological illness or disease, but is a functional disorder of the brain where sudden, brief electrical malfunctions may temporarily block awareness. Many are unaware of what epilepsy is, and there continues to be amounts of misunderstanding associated with this disorder.

Lavender is the colour of epilepsy because the lavender flower is associated with solitude, representing the feelings of isolation and seclusion that people living with epilepsy and seizure disorder often experience, says Epilepsy Niagara.

Approximately 300,000 Canadians have epilepsy and each year 14,000 new people learn that they too are affected. This is twice as many people as those with muscular dystrophy, cerebral palsy, multiple sclerosis andcystic fibrosis combined. Yet epilepsy is still the least funded neurological disorder, says the release.

With Lighting the Falls Lavender, the goal of Epilepsy Awareness Month is to raise awareness and encourage people to acknowledge and understand this disorder. By changing the attitudes of those who are uninformed, we will be able to encourage the public funding needed to support epilepsy centres, support services, education, and research for a cure.

Source: http://www.wellandtribune.ca/

A SERENE WISH TO ME FROM MARLENE

MAY YOU ALWAYS FEEL LOVED

May you find serenity and tranquility in a world

You may not always understand.

May the pain you have known and conflict you have experienced

Give you the strength to walk through life

Facing each new situation with courage and optimism.

Always know that there are those whose love and understanding

Will always be there, even when you feel most alone.

May you discover enough goodness in others

To believe in a world of peace.

May a kind word, a reassuring touch, a warm smile be yours

Every day of your life,

And may you give these gifts as well as receive them.

Remember the sunshine when the storm seems unending.

Teach love to those who know hate,

And let that love embrace you as you go into the world.

May the teaching of those you admire become part of you,

So that you may call upon them.

Remember, those whose lives you have touched

And who have touched yours are always a part of you,

Even if the encounters were less than you would have wished.

It is the content of the encounter that is more important than it's form.

May you not become too concerned with material matters,

But instead place immeasurable value on the goodness in your heart.

Find time in each day to see the beauty and love in the world around you.

Realize that each person has limitless abilities,

But each of us is different in our own way.

What you may feel you lack in one regard

May be more than compensated for in another.

What you feel you lack in the present

May become one of your strengths in the future.

May you see your future as one filled with promise and possibility.

Learn to view everything as a worthwhile experience.

May you find enough inner strength to determine your own worth by yourself,

And not be dependent on another’s judgment of your accomplishments.

May you always feel loved.

Copyright 1987 Sandra Sturtz Hauss

I have always loved this poem because it beautifully expresses my wishes for you.

Love,

Marlene

http://www.MotivateUs.com

MyBlogLog Verification

Undergoing MyBlogLog Verification

ACCEPT LIFE AS IT IS

Lent is the period of forty days which comes before Easter, beginning on Ash Wednesday. Lent is observed as a time for prayer and penance recalling the events leading up to Jesus' crucifixion. Only a small number of people today fast for the whole of Lent, although some maintain the practice on Ash Wednesday and Good Friday. Purple drapes and altar frontals are used in some churches throughout Lent, because it is associated with mourning and so anticipates the pain and suffering of the crucifixion. Purple is also the colour associated with royalty, and celebrates Christ's resurrection and sovereignty. Most Christians regard Jesus' time 40 days fasting in the wilderness as the key event for the duration of Lent.

(taken from: http://www.cultureandrecreation.gov.au/articles/easter/)

Many of us (People With Epilepsy) suffer terribly or even die as a result of uncontrollable seizures. Some have to go through surgeries to control seizures. Most of us are on AED (Anti Epileptic Drugs) for life. Today I still have jitters at the thought of my past seizures which had landed me in hospitals several times. Each time I wake up on hospital beds I grimaced in pain and break down into tears upon finding out that some kind Samaritans had picked me from streets, restaurants and shopping malls where I had seizures. I knew God had his angels in the good Samaritans to render help and assistance whenever I was in a state of seizure. God had been extremely steadfast in providing great care and love for me.

Whenever I try to visualise Christ crucified on the cross and feel his unbearable and immeasurable pain I know my pain and sufferings from epilepsy are nowhere near at all to that of Christ’s. I have learned not to complain too much about my epileptic condition but to accept it as a gift from God. I suffered so that I may feel and understand other people’s sufferings better. I am quite natural in lending a helping hand and aiding people in need of help.

I thank God for my success in achieving a good record of three over years free of seizures. I am a very happy epileptic person who still takes a low dose of AED for life. "A few tablets of AED a day keep the seizures and the doctors away."

LIFE IS MEANINGLESS WITHOUT GOD