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Covid19 Media webcast

Join the Epilepsy Foundation for an Evening with Epilepsy Advocate and Reality TV Star, Rick Harrison

Watch this fab live Webcast during Covid19 pandemic

WHAT

Reality TV Star, epilepsy advocate and person with epilepsy Rick Harrison is joining an Epilepsy Foundation Facebook Live. Rick will discuss his role as an Epilepsy Foundation board member, what it was like for him growing up with epilepsy, his life in his home state of Nevada during COVID-19, and fun stories from his famous shop and television show, “Pawn Stars.”

WHERE

Facebook – https://www.facebook.com/EpilepsyFoundationofAmerica/videos/593310541393628/

Just click the above link to watch the hour long entertaining webcast, from the Epilepsy Foundation of America ( http://www.epilepsy.com ) and Talk About It ( http://www.talkaboutit.org ).

WHY

Even in times like these, seizures don’t stop, and neither has the fight to END EPILEPSY®. Over a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy.

Having lived with epilepsy throughout most of his childhood and teens, Rick became a national spokesperson for the Epilepsy Foundation in 2013 and since, has partnered with the Foundation to create awareness and help address the needs of the epilepsy community.

ABOUT EPILEPSY

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

ABOUT THE EPILEPSY FOUNDATION

With a network of nearly 50 partners throughout the United States, the Epilepsy Foundation is leading the fight to END EPILEPSY®. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $68.7 million for epilepsy research and supporting 3,091 epilepsy investigators and specialists in their early careers. To learn more, visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Categories
Covid19 epilepsy Epilepsy Awareness Day and Expo at Disneyland Media news Podcast webcast

Join Actor and Longtime Epilepsy Advocate, Greg Grunberg – Star Wars, A Star Is Born, Star Trek and more – for a Facebook Live with the Epilepsy Foundation

WHAT

Hear from Actor and friend of the Epilepsy Foundation and Bristol Epilepsy, Greg Grunberg (“Star Wars: The Rise of Skywalker,” “A Star is Born,” “Star Trek Beyond”), in this Facebook Live with the Epilepsy Foundation.

Greg discusses his work helping people talk about epilepsy and seizures, as well as his non-profit Talk About It that features lots of celebrities (TalkAboutIt.org), his acting career on Films & TV shows and his ongoing efforts to advocate and support everyone impacted by this Epilepsy.

ONLINE HERE

Facebook – https://www.facebook.com/54326959753/videos/927335664364328/

Watch this live entertaining 1 hour chat with Greg Grunberg here, via this link.

WHY

Even in times like these, seizures don’t stop, and neither has the fight to END EPILEPSY®. Over a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy. Greg’s 23-year-old son Jake has had epilepsy for most of his life.

Greg is passionate about the cause and committed to creating awareness to help raise funds for research, services and education.

ABOUT EPILEPSY

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

ABOUT THE EPILEPSY FOUNDATION

With a network of nearly 50 partners throughout the United States, the Epilepsy Foundation is leading the fight to END EPILEPSY®. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $68.7 million for epilepsy research and supporting 3,091 epilepsy investigators and specialists in their early careers. To learn more, visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Categories
news

Coronavirus (COVID-19) and Epilepsy

Dr Simona Balestrini is the Muir Maxwell Research Fellow at the Epilepsy Society. Here, she has put together an FAQ factsheet for those with epilepsy about the coronavirus (COVID-19).

1. Do I have a higher risk to get the coronavirus if I suffer from epilepsy?

There is no evidence of increased risk of coronavirus infection in people with epilepsy compared to the general population. The risk is increased in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.

2. Do people with epilepsy have a weakened immune system?

There is no evidence that people with epilepsy have a weakened immune system, therefore they should not be considered ‘immunocompromised’ or to have an ‘immune deficiency’. Obviously, there are individual differences, e.g. some people with epilepsy might have a weakened immune system due to co-existing other health conditions and associated immunosuppressive treatment.

3. Does treatment with antiepileptic medications increased the risk of coronavirus infection?

There is no evidence of increased risk of coronavirus infection in people taking antiepileptic medications. Therefore, it is important to keep taking your epilepsy medicine as usual throughout any illness.

4. What should I do to avoid the infection?

There are a number of measures that might help in reducing the risk of infection. These include: avoid close contact with people who are unwell; hand hygiene (wash hands with soap and water, or use alcohol hand gel, often, especially after using public transport and at any time before eating); cover the mouth and nose when coughing or sneezing with a tissue or a sleeve; try to avoid touching your eyes, nose or mouth if your hands are unclean. Try to keep healthy by following a nutritious diet and taking gentle exercise. Keep your home well ventilated by keeping the window open.

5. What should I do if I have symptoms?

At present, it is recommended to stay at home for 7 days if you have either a high temperature, or a new persistent cough and you live alone. If you live with others and you, or one of them, have symptoms, then the whole household must stay at home and not leave the house for 14 days. This will help protect others in the community while people are infectious. Please follow the advice from Public Health England (PHE) which is updated daily: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public. If you do become unwell and suspect you could have coronavirus, use the NHS 111 coronavirus service or ring 111 for advice.

Most cold medicines that you might consider for symptom relief (typically paracetamol to control fever or muscle aches) are fine.  But take advice before using products containing diphenhydramine (such as Benadryl). Just check the label before purchasing any products. If in doubt, check with the epilepsy team.

6. Will people with epilepsy be more severely affected by coronavirus?

For most people, coronavirus causes mild symptoms, and they recover quickly after a few days. Currently there is no information to say that people with epilepsy are more severely affected than people without health conditions.

7. If I catch coronavirus could it trigger a seizure?

There is no information about coronavirus triggering seizures in people with epilepsy. However, infections, fever (particularly in children), sleep deprivation and in general being unwell can trigger seizures in some people with epilepsy.

8. If I catch coronavirus, do I need any specific treatment?

As described above, many of your flu symptoms can be reduced with over the counter medications.  The doctors involved in treating you might recommend antivirals, antibiotics or other specific treatment.  Occasionally these may interact with your anti-epileptics, reducing their effectiveness or causing side effects.  Always let know doctors treating you that you are taking anti-epileptic medications and ensure you know the dose and type of tablets you use. 

9. Will the situation with coronavirus lead to shortages of my epilepsy medicine?

The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. Do not try to stockpile your medication in case you have to self-isolate. This could cause shortages of medications and put others at risk of a seizure. It is best to carry on as normal.

10. If I have to self-isolate how will I get my medicines?

The NHS is currently advising people who may have been exposed to coronavirus to self-isolate. Just in case you need to do this, you may wish to think now about how you would get your medicines. This could be getting a friend or family member to collect your prescriptions for you. Or you could make arrangements for your pharmacy to deliver your medicines to your home. You may wish to check with them now if they offer this service, and how to sign up to it. Most prescriptions are now signed, sent and processed electronically.

Make sure you are registered for online services through your GP. This will enable you to book, check or cancel appointments online and order repeat prescriptions. Take your prescription to your pharmacy in plenty of time – up to seven days before you need your medication. This will allow your pharmacist to call other pharmacies or suppliers if there are any delays in getting your medication. Ordering your prescription in good time will also enable you to visit another pharmacy if your own pharmacy is temporarily closed due to the coronavirus.

Thanks to Epilepsy Society for these wonderful and helpful tips : https://www.epilepsysociety.org.uk/epilepsy-and-coronavirus-covid-19-faqs#.XnDuHZP7SL8

Categories
news

New Seizing Life Podcast

Seizing Life® is a CURE audio podcast and webcast, which aims to inspire empathy, offers helpful stories, and to give hope – as we search for a cure for Epilepsy and seizures.

Listen as guests share stories and insights on living with and battling epilepsy – via the following links :

https://www.cureepilepsy.org/seizing-life/

https://www.stitcher.com/podcast/seizing-life?refid=stpr

Categories
Action Drug News epilepsy Health news

NEWS ALERT 🚨 : Some AED Medications Recalled

Please visit : https://www.gov.uk/drug-device-alerts/fmd-alert-class-2-mdr-123-05-19?cachebust=1561646198#Product-table

Certain batches of three medicines for Parkinson’s, epilepsy and blood clots are being recalled in the UK, and patients are being asked to arrange a new prescription via their GP.

The affected prescription-only medicines are :

  • Neupro
  • Vimpat
  • Clexane

with a B & S Healthcare label, the UK’s medicine regulator said.

VIMPAT 100MG TABS 1 X 56 254265 01P0324 30-APR-23 11-JAN-19
VIMPAT 100MG TABS 1 X 56 255279 02P1067 30-APR-23 19-MAR-19
VIMPAT 100MG TABS 1 X 56 258582 02P0892 30-JUN-23 25-MAR-19
VIMPAT 100MG TABS 1 X 56 254265 02P0893 30-APR-23

The drugs may not have been stored correctly before reaching patients.

But the risk of the drugs not working properly is very low, it added.

DOWNLOAD THIS LETTER : https://assets.publishing.service.gov.uk/media/5d1332ffe5274a069552c1ed/EL__19_A15_final_.pdf

The Medicines and Healthcare products Regulatory Agency (MHRA) said the recall was precautionary and patients should continue taking their medicine.

Once they have a new prescription, patients should then return the affected batches to their pharmacist.

The medicines are:

  • Clexane 8000iu Injection 0.8ml
  • Neupro 4mg/24 hr patches
  • Vimpat 100mg tablets

The batches of medicines affected are listed on the MHRA website.

There is no evidence that the medicines, which are in Italian packaging, were tampered with, en route from Italy to the UK.

More drugs recalled from pharmacies

A number of other medicines are being recalled from pharmacies as a precaution.

They include certain drugs for psoriasis, high cholesterol and chronic obstructive pulmonary disease – also listed online by the MHRA.

Pharmacies are being asked to check for affected packs in B & S Healthcare labelling, and return them to their supplier.

If patients have any questions, they should speak to their GP or pharmacist, the MHRA said.

Dr Samantha Atkinson, director of the MHRA’s Inspection, Enforcement and Standards Division, said: “Making sure the medicines people and their families take are acceptably safe and effective is the primary role of the MHRA and is our highest priority.

“When we are made aware of potential risks to the security of the supply chain, the MHRA takes action to protect the public.”

The recall is taking place as part of a continuing MHRA investigation.

Categories
epilepsy Epilepsy Awareness Day and Expo at Disneyland Media Podcast

Talk About It Podcast : Episode 1

Link : https://www.stitcher.com/podcast/talk-about-it-4

Episode Info
Actor Greg Grunberg (A Star Is Born, Star Wars, Star Trek, Heroes, Alias) takes the Talk About It organization to the next level with this brand new podcast!

In this episode, he sits down with filmmakers such as director JJ Abrams (Star Wars, Star Trek) and celebrities that use their platforms to help remove the stigma of Epilepsy and promote the spreading of knowledge about the condition.

https://app.stitcher.com/splayer/f/348159/58200642

About This Show
Talk About It! – The Podcast, hosted by Greg Grunberg and produced by the Epilepsy Foundation, is a new and exciting way to help raise epilepsy education and awareness. Each episode will include interviews and profiles of people living with epilepsy, facts and stats about epilepsy and seizures, tips on healthy living, and special guests from all over the entertainment world.

Categories
Campaigns epilepsy events Media news

Facebook Live – January 16th 2019 : “A Mind Unraveled” with Kurt Eichenwald

Watch this Facebook Live – on Wednesday, January 16, 2019, at 8:00 pm. ET

The epilepsy journey can be a traumatic experience, especially when people are not given correct information or do not see an epilepsy specialist. Myths, misbeliefs, and lack of knowledge all contribute to the misperceptions and negative life experiences faced by so many people with epilepsy.

Kurt Eichenwald is a national award-winning journalist and New York Times bestselling author. He will share his epilepsy journey by talking about his book, A Mind Unraveled, on a Facebook Live on January 16 at 8:00 p.m. ET. The stories about his life may resonate with you or someone you know. Others may be surprised by the persistent challenges and difficulties obtaining proper epilepsy care in this day and age.

Watch online, click the link : www.facebook.com/EpilepsyFondationOfAmerica

This broadcast will also be archived on the facebook page to watch again if you miss it.

Join the Facebook Live on January 16 for a chance to get a free copy of A Mind Unraveled.

  • During the Facebook Live, you will get instructions on how to obtain a copy of the book.
  • A limited quantity of books is available so make sure you tune in to get one!

This program is supported by NeuroPace, Inc. Please note the contact information shared to receive a copy of A Mind Unraveled by Kurt Eichenwald will not be added to any email or mailing list from the Epilepsy Foundation or NeuroPace, Inc. You can choose to receive information from one or both organizations by checking the appropriate box when entering to win a free copy.

Categories
epilepsy Health Media NHS Podcast

PODCAST: Episode 4 – EPILEPSY AND WOMEN

Dr/Consultant Howard Faulkner, is a Epilepsy Neuro-Consultant in Bristol. In this podcast recording, Dr Faulkner talks about WOMEN AND EPILEPSY, providing a great insight and information in how Epilepsy and Seizures effect the female body, at all ages.

Podcast Duration: 1 Hour
Podcast Recorded: November 2012
Podcast Recorded at: Bristol Epilepsy Support Group Monthly Meeting

MORE INFORMATION ABOUT FEATURED SPEAKER:

NAME: Dr Howard Faulkner
Link: http://www.nbt.nhs.uk/our-services/a-z-consultants/dr-howard-faulkner

Year of first qualification: 2002, Imperial College, London
Specialty: Neurology
Clinical interest: Epilepsy, Epilepsy Surgery

Dr Howard Faulkner completed his BSc, PhD and MBBS at Imperial College, London before moving to Bristol for his Medical and General Neurology training. He then completed an Epilepsy and EEG Fellowship in Sydney, Australia, and was appointed as a consultant in 2011.

Dr Faulkner provides a full range of epilepsy services from first seizure clinics to epilepsy surgery workup.

PODCAST PRODUCTION NOTES:

This podcast was recorded and produced by SAM DOWNIE from Dsoundz Media.
Visit the website, at: http://www.dsoundz.co.uk

Follow Sam Downie on Twitter at: @samdownie / http://www.twitter.com/samdownie

This is Episode 4 from the UK Epilepsy Podcast, and it comes from the Bristol Epilepsy support group, in Bristol, SW England. Follow the hashtag on Twitter: #ukepilepsypodcast for updates and more. And follow @BristolEpilepsy on Twitter ( http://www.twitter.com/BristolEpilepsy ).

THANKS FOR LISTENING !

Categories
Bristol epilepsy events news

Fundraising Gig for Epilepsy in Bristol – Aug 10, 2018

36522930_1282564661879126_8313714877143187456_nJoin AFO Audio and friends, for an exciting fundraising gig for Epilepsy Society to be held in Bristol on FRIDAY 10TH AUGUST, 2018.

Time: 7PM

Address: The White Hart Pub, 84 Bedminster Parade, Bedminster, Bristol , BS3 4HL

Featuring several bands : Hannah Jane, Coldwater, Rokyoot, Place of Kings, Zendium Moon and Ellie Moonshine & The Prohibition Band.

Suggested Donation Entry : £5 (or more)

More Information from : https://www.facebook.com/afo.audio

Categories
Education epilepsy events Health Research

Take Part In Epilepsy Research ! – at Exeter University

Do you have lived experience of #Epilepsy, or care for somebody that does? Come to the workshop on Wed 21st March, held at #Exeter University – to help us develop a new approach to #Epilepsy Surgery using mathematical modelling to understand where #Seizures start and how they spread throughout the #Brain .  Here’s the info :

Improving surgical treatment for epilepsy workshop

  • A third of people diagnosed with epilepsy do not respond to drug treatments and surgery is the only treatment option
  • Surgery is often not completely successful as it is difficult to identify exactly which areas of the brain are causing the epilepsy
  • Researchers in Exeter are developing a new approach to epilepsy surgery using mathematical modelling to understand where seizures start and how they spread throughout the brain.

How can you get involved?

We are keen to invite people who have, or care for someone with epilepsy to a workshop to discuss this research. If you have had surgery or have been offered or are considering surgery we would be particularly interested in hearing from you.

Join us at our workshop:

WHEN: Wednesday 21 March 2018
TIME: afternoon (exact time TBC)
WHERE: Living Systems Building, University of Exeter, Stocker Road, EX4 4QD

Notes:

Refreshments will be provided
We will pay a small “thank you” payment of £25 and also reimburse your travel expenses (such as Train and Taxi). If you would like to join us, or for more information, please contact:

Silvia Bortoli, my email is: s.Bortoli@exeter.ac.uk
Leandro Junges, my email is: l.l.l.junges@exeter.ac.uk

This work is generously supported by an EPSRC Institutional Sponsorship Grant for Predictive Modelling in Healthcare:  http://www.exeter.ac.uk/pmh/