Bristol Epilepsy Social Support GroupBristol Epilepsy Support Group – are now following NHS guidance regarding the Coronavirus.
OUR MEETINGS HAVE BEEN CANCELLED
Our meetings in April, May and June 2020 – are all cancelled due to the Coronavirus (COVID-19)
We shall update you soon, when possible, with new dates.
We may also go online and hold virtual meetups, so watch this space.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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 :
You can Donate to the “END EPILEPSY Live!” here : https://donate.epilepsy.com/donate
All funding goes directly to the Epilepsy Foundation of America, and on to local chapters to help local patients and families in the USA with support of all kinds.
“END EPILEPSY Live!” will be hosted by Epilepsy Foundation spokesperson and celebrity Greg Grunberg (“Star Wars: The Rise of Skywalker,” “Alias,” and “Heroes”). Greg’s son Jake, is living with epilepsy, so ending epilepsy, and the challenges that come with it, is personal for Greg and his family.
It’s what motivated him to start the website and podcast “Talk About It!“
On Saturday November 9th, he is gathering his celebrity friends, actors, great bands and other special guests to create a fun, fundraising, live webcast event, where you will be entertained as well as be educated and learn about epilepsy and seizures.
Special announcement from @GregGrunberg! Join us on November 9, 2019, for a very special event called #EndEpilepsyLIVE. Stay tuned for details about where you can watch and who will be attending. pic.twitter.com/OtJtuolBo9
— Epilepsy Foundation (@EpilepsyFdn) October 11, 2019
Sam Downie, from the Bristol Epilepsy Support Group and Actor with Epilepsy, has already filmed a short film piece to camera for the event – where Sam talks about how he as an actor lives with Epilepsy and Autism, and how seizures have impacted his life, as a working Actor, Character Actor and Voice, Presenter and BAFTA nominated Filmmaker – so join the live webcast and look out for Sam’s appearance amongst the “galaxy of stars” joining Greg and friends in Hollywood, Los Angeles.
Hollywood director, JJ Abrams wants you to talk about Epilepsy. He want’s the film and tv industry to talk about seizures, he want’s YOU to know what to do ! But, can you spread and share his message ?
As one of a few actors who is recognisable (with no heavy make-up) in the recent “Stars Wars” and “Star Trek” movie franchises, Greg Grunberg has a question for YOU – Are you #TeamTrek or #TeamWars? Here’s what to do, and how you can take part:
Mention #TeamWars or #TeamTrek and #EndEpilepsyLIVE on Twitter / Instagram , and Greg Grunberg and team, might give you a shout out during the live broadcast as well as on his Twitter ( follow @GregGrunberg ) and we might play your selfie video on #EndEpilepsyLIVE too.
Here’s actors LeVar Burton (Lieutenant Commander Geordi La Forge – ST-TNG) ( and Brent Spiner (Commander Data – ST-TNG ), talking about Epilepsy.
Our mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
We connect people to treatment, support and resources; lead advocacy efforts and fight discrimination; fund innovative research and the training of specialists; and educate the public about epilepsy and seizure first aid.
* Link to IMBb profile
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.
With a network of nearly 50 partners throughout the United States, the Epilepsy Foundation is leading the fight to END EPILEPSY. 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. Over the past 18 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 123,470 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter. Authored By: Epilepsy Foundation Communications Team . October 2019
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 :
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:
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.
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.
Hello, to keep you updated, here’s the dates of our next four Group meetings, for 2019. All meetings start at 7PM, and end by 9PM.
Our meeting schedule can be added to your online diary, just click this link :
https://calendar.google.com/calendar?cid=YnJpc3RvbGVwaWxlcHN5QGdtYWlsLmNvbQ
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.
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.
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.
Here are some notes and links to what we are talking about on this month’s Bristol #Epilepsy Support Group meeting:
DWP STOP accepting new Universal Credit claims from people on PIP and revert back to legacy system
Epilepsy Society Conference 2018 – report back
https://www.epilepsysociety.org.uk/annual-conference-1
Epilepsy Foundation of America & Talk About It: talk on Cannabis and CBD
Join 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
International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world.
This is a day for everyone and every organisation:-
While International Epilepsy Day celebrations vary from region to region, with cultural, geographical and climatic circumstances all impacting on activities, the common thread is the desire to highlight epilepsy and to bring attention to the need for better awareness and understanding, appropriate legislation, improved diagnosis and treatment services, and increased research in order to better the lives of all those affected by epilepsy.
This is your day, to celebrate how you will. Any activity, no matter how small, when combined with the efforts of individuals, groups and associations around the world, will collectively impact on how epilepsy is viewed. What you do to mark the day, in your own way, with the resources available to you, will make a difference to the 65 million people in the world who are living with epilepsy.
VISIT : https://epilepsy.org/
