CROYDON EPILEPSY SOCIETY

NEWSLETTER

Spring 2016

We seem to have escaped the heavy snow down in the south this winter and just had to deal with heavy rain and cold winds ! However, the days are getting longer and the sight of daffodils and even the odd flowering tulip are welcoming signs that Spring is on its way. An early Easter in March will give us time to relax with family and friends.

We have 2 elections ahead of us for London Mayor on the 5th May and then we will have the European Union membership referendum on 23rd June 2016.

Both are important issues so make sure you are registered to vote. Under the new individual voter registration system some people will no longer be on the register, especially if they’ve moved home recently. If you are not sure you can check by contacting the electoral services team at your local council. There will be plenty of media coverage to learn more about the relevant issues over the next few months.

Surprisingly, there have been a number of articles in national newspapers recently on the subject of epilepsy.

A summary is provided in this newsletter of an article appearing in the Mail on Sunday on a new epilepsy drug Brivact.

We have also included an article about how a number of main stream television soap programmes that have highlighted epilepsy in their story lines.  

Harrison Ford, the famous Hollywood actor, has revealed this month that his daughter suffers from epilepsy. His 26 year old daughter Georgia was described as his “hero”. Speaking at a New York event in aid of epilepsy, he said that Georgia had not had a seizure for eight years after getting the right medication.

Purple Day Easter Saturday 26th March 2016

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents including Antarctica participated in Purple Day!

National Epilepsy Week

National Epilepsy Week  takes place from Sunday 15th May to Saturday 21st May 2016. There will be a display in May at Croydon Central Library to promote it.

We are holding our AGM during National Epilepsy Week on Tuesday 17th May.

We have booked a room at the East Croydon United Reformed Church hall to host the AGM this year. The address is Addiscombe Grove, Croydon, CR0 5LP.

We booked the church hall last year as it is within walking distance of East Croydon station and is more central encouraging more members to join us last year. Both Marco and myself will be hosting the event. Our President, Prof Frank Besag will hopefully be able to join us as well.   We will provide drinks and nibbles.  The start time of the AGM will be at 7.30pm with people arriving from 7.15pm. We will again extend the invitation to a number of people who have contacted us during 2015 for advice and support.

I would also like to remind members that the 2016 membership subscription is now due. Please find a renewal form included with the Newsletter. Your on going support is vital to keep the society going as we have no longer have council funding. If you are happy to receive an email copy and do not require a postal version as well, please tick the relevant box on your renewal form as this helps us to save both printing and postage costs.

Dawn Gibbons, Honorary Secretary

New Drug for Epilepsy Treatment

A breakthrough drug that helps prevent epilepsy seizures is now available on the NHS. The £5 a day drug Brivact works by blocking a protein in the brain to prevent the release of electric signals that cause signals - and patients on it suffer fewer side effects than those taking other types of epilepsy medication.

Around 600,000 people in the UK suffer from epilepsy with 100,000 of those being treated in hospital for epileptic seizures. Only half of sufferers can control their seizures with medication, putting them at risk of serious injury. However, it is is estimated that the figure could rise to 70 per cent with the right treatment.

The twice- a- tablet has been given the go ahead for use in the UK by the European Medicines Agency as an add on treatment for patients with partial-onset seizures which effect one side of the brain.  

Designed to be used alongside a patients existing medication, Brivact targets a protein in the brain known as the synaptic vesicle protein protein 2A. It is thought that this stops the release of seizure-causing electrical signals. Research is ongoing. Brivact has been developed by the global biopharmaceuticals from UCB which was also behind the anti-seizure drug Keppra.

Patients taking anti-epilepsy drugs can experience side effects such as depression, drowsiness and headaches. However, Dr Dominic Heaney , a consultant neurologist at London’s National Hospital for Nervous Diseases reported that in trials for Brivact only one in 20 reported side effects.

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said the drug could prove an “effective” treatment for patients who have struggled to become seizure free.  

Please refer to your doctor or epilepsy consultant for further information.

Source: Mail on Sunday March 6th 2016.

Epilpesy in the Media

There has been a number of programmes publicising epilepsy in the the media. There have been two separate story lines in the popular soap series Emmerdale and Eastenders. In Emmerdale, the vicar Ashley Thomas played by actor John Middleton is diagnosed with epilepsy after being injured in a car crash. The second, was in Eastenders where Nancy played by Mandy Hill, the daughter of the Carters,  owners of the Queen Vic, was revealed to have epilepsy. Apparently a lot of negatives comments were made on social media when Nancy’s first seizure was first aired in January 2014 hence the need to further educate the public at large about epilepsy. However, when Ashley’s epilepsy was first aired in June 2015 there was a lot of support and the audience reacted more positively when viewers took to twitter to give their feedback and opinions with many commending the show for adding to the awareness raised about epilepsy.

Some of you may follow these soaps. Usually if there are illnesses given to characters in a storyline, more main stream conditions such as cancer or heart conditions are highlighted, so it is good that epilepsy has been given publicity and reached a huge proportion of the UK population. A survey written in 2011 written by Dalepak suggested that around 33.9 million people tune in to an episode of their favourite soap at least once a week.  

Also celebrity businesswoman  Katie Hopkins who was introduced to our screens in the Apprentice in 2007 and appeared in I’m a Celebrity … Get Me Out of Here!  has been in the news recently talking about her epilepsy. Katie made it all the way to the semi-final of The Apprentice – only to decline a place in the final. In 2009 she publicly announced her epilepsy having first being diagnosed at 18 with the condition. In January 2015, the mother-of-three opened up again while appearing as a contestant in Celebrity Big Brother. In February 2016 Katie underwent brain surgery in a bid to cure her epilepsy. The operation normally takes up to 8 hours, Katie was out for 12 hours. But her agent says tests have come back positive and she is feeling great.

Croydon Epilepsy Society Contact Details

Drop In Centre Update

We are endeavouring to continue running the centre on a Wednesday on a regular basis from 11 am to 3pm subject to staff cover. However, please contact us in advance if you would like to visit us at the centre so a volunteer will be there to speak to you.

When unmanned please email cesociety@btconnect.com or phone us and leave a message and we will endeavour to get back to you as soon as possible.

Further information can be provided by the following national support groups when our centre is closed:

Epilepsy Action     www.epilepsy.org.uk                   Helpline 0808 800 5050

Epilepsy Society   www.epilepsysociety.org.uk        Helpline 01494 60140

Address: The Len Pyant Community Centre, 17 Elmwood Road, Croydon CRO 2SN.

Telephone: 020 8665 1255

                        

Email Address: cesociety@btconnect.com ;  croydonepilpesy@gmail.com

Visit our Facebook Page: www.facebook.com

Web Site: www.croydonepilepsysociety.org

Elected Members

President        

Professor F M C Besag, FRCP, FRCPsych, FRCPCH.

Vice - Presidents                                Honorary Vice - Presidents

Rev G Derriman                                Dr P B C Fenwick                

Mrs R Richmond                                Mrs Rosemary Aselford

Gavin Barwell MP

Committee Members 

 

Mr Marco Valencia        Chairman

Ms Dawn Gibbons          Honorary Secretary

Mr Richard Ruffell           Honorary Treasurer

Mr Stephen Marshall        

Wishing Members

 a Happy Easter !