For some of us, epilepsy can be an isolating condition which can make us feel lonely and misunderstood. But there are actually many people in the UK and around the world with the condition. One of Epilepsy Action’s roles is bringing people together to share their knowledge and experiences and talk to other going through similar situations.
We know that many of you take comfort from meeting others affected by epilepsy through our branches and coffee and chat groups. As we aren’t currently able to offer that support, our virtual groups are a great way of connecting with others.
You can find more information on all our support services at epilepsy.org.uk/virtualgroups you can also get more details by calling us on 01132108800.
Source Epilepsy Action
A type of gene therapy could help those with rare forms of childhood epilepsy, including Dravet Syndrome. This breakthrough could lead to treatments for developmental epileptic encephalopathies developing from a single genetic mutation. Encephalopathy is when brain function is impaired by a condition such as viral infection or toxins in the blood. Within the brain the gene SCN8A controls a sodium channel that allows neurons to transmit an electric signal. Sodium channels are membranes in the brain responsible for allowing neurons to communicate. Mutated versions of the SCN8A gene can cause these channels to become hyperactive and bring on repeated seizures. This condition is knowen as SCN8A-Related Epilepsy and average inset age is just four months old.
Miriam Meisler is a professor of neurology at U-M Medical School in the US. Her team have studied the condition for many years and are trying new therapies to treat this epilepsy. She says approximately half of these people affected are severely impaired and cannot walk or talk.
The breakthrough using antisense oligonucleotide (ASO’s) which are short DNA or Ribonucleic acid (RNA) molecules enabled researchers to control how much genes communicate with the body. RNA acts as a messenger carrying information from the DNA about specific proteins. By controlling the amount of RNA expressed by the mutated genes, the team found they could reduce its effects on the body.
By using mice with the same mutated gene they were able to develop an off switch for the gene by activating the ASOs. The effect was dramatic and unambiguous says Meisler. We had a four-fold increase in lifespan with added effects of repeated treatments. There was no evidence of low-level seizure activity in the treated mice.
The level of RNA expressed was reduced by half after the treatment. It was also discovered that the technique was effective against other types of epilepsies including Dravet Syndrome.
The team is now carrying out further testing to see how effective they are against other seizure types. The results are published in Annals of Neurology. For the full study visit: https://onlinelibrary.wiley.com/doifull/10.1002/ana.25676.
Nanotechnology is being studied to develop revolutionary treatments for neurological conditions such as epilepsy. This technology involves the study and development of devices that could control
extremely small objects such as atoms and molecules. Researchers hope that these nanodevices could
could be used as brain implants that control the activity of neurons, reducing or stopping seizures.
The IN-FET project (Ion Neuromodulation Epilepsy Treatment) was launched in January 2020 and has recently been given a 3 Million Euro grant from the European Union. With the approved funding, the will be looking at using nanotechnology and looking at ions such as magnesium, potassium and calcium. These are the chemicals which allow neurons to communicate. Nanodevices could look at and control these ions, and importantly, their concentration. From here it should be possible to change their cell activity, meaning activating or turning off certain neurons. In epilepsy it’s the flow of ions that leads to the burst of electrical activity in the neurons, leading to seizures. Here the nanodevices would act as an ion trap, so they no longer excite the cells, preventing such seizures. Professor Michele Giugliano, is the director of the Neuronal Dynamics Lab at SISSA (Scuola Internazionale Superiore di Studi Avanzati) in Italy. She says Epilepsy is one of the most common neurological conditions affecting 50 Million people worldwide. Drug treatment is a widespread approach to fight it but for many people medication is no help. Epilepsy drugs prove ineffective with the condition. Drug resistance amongst adults ranges between 30% and 40%.
The European project brings together experts in nanoengineering information technology and neurobiology and is funded by the European programme Future Emerging Technologies (FET) Open. The initiative will involve IBM Research, Multi Channel Systems, the Universities of Geneva and Sheffield and the Italian Inter-University Consortium for Nanoelectronics, amongst other parties. The aim of the group will be to develop implantable devices that can alter the concentration of these microscopic ions. These devices will be able to measure the electrical activity of neurons and actively work to correct it.
Todays experimental therapies for restoring or repairing brain functions in neural conditions often involve changing or silencing hyperactive brain circuits explains Professor Guigliano. This can be done with medicines, gene therapy, or electrical or magnetic techniques to affect the brain. However all of these come with serious drawbacks. They unnaturally try and control these neurons. Our idea is to control ions, the very substances that the brain normally uses to function. Through this we’ll be able to discover and test new treatments for epilepsy.
Source Epilepsy Action
Our yearly quiz is now cancelled we hope to have this event at a later date. The new date will be put on the website
People with epilepsy face a glaring employment gap according to recent government figures highlighted by Epilepsy Action. Statistics show that as much as 66% of working age people with epilepsy are not in work. This has prompted Epilepsy Action to call for fairer access to, and treatment in, the workplace.
The employment rate for people with epilepsy is far lower than for people with most other disabilities, according to data from the Office for National Statistics. The rate for people with epilepsy as their main condition is 34% compared to 53% for people with disabilities generally. This is compared to an employment rate of 81% for those without a disability. Research by the Trade Union Congress (T.U.C.) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non disabled workers.
Some people with epilepsy are unable to work at all. But depending on how epilepsy affects their daily life many people can work with minimal adjustments. Despite this they commonly report experiencing hurdles when applying for jobs or within the workplace. They say that disclosing their epilepsy at interviews can have a negative impact on their application. Many talk about experiencing discrimination from their employer or colleagues.
In a recent Institute of Employment Studies report, employers admitted they were reluctant to hire people with epilepsy largely due to safety concerns.
To access the Epilepsy Action toolkit for businesses to support their staff with epilepsy, visit epilepsy.org.uk/awarenesstraining.
Source Epilepsy Action
Online trolls have deliberately attacked people with epilepsy by posting seizure-inducing videos on Twitter. In November last year malicious users hijacked epilepsy Foundation’s Twitter account @EpilepsyFdn and hashtag to post graphics and videos containing flashing lights and strobe effects. It’s not certain how many people have been affected but the Epilepsy Foundation has decided to press criminal charges against the users involved. The organization has identified more than 30 Twitter accounts responsible for posting the videos. In response Twitter took the measure to ban certain animated graphic files from its platform. This was after the social media organization discovered a bug that caused these types of files to autoplay when tweets were sent.
In a statement Twitter said we want everyone to have a safe experience on Twitter. These graphics were fun but they don’t respect autoplay settings so we are removing the ability to add them to Tweets. This is for the safety of people with sensitivity to motion and flashing imagery including those with Epilepsy.
Photosensitive epilepsy is said to affect around 3% of people with epilepsy. In the UK around 20,000 people are said to be vulnerable to flashing lights or strobe effects such as those in cinemas or nightclubs.
Source Epilepsy Action
Disney has advised that the latest Star Wars film could pose a seizure risk in people with Photosensitive Epilepsy. The Rise Of Skywalker was released in the UK on December 19th 2019 and fans turned up in droves to see it. Fans of the Sci-Fi will know the Star Wars movies consistently feature epic battle scenes, with lasers and lightsabers lighting up the big screen. And it’s possible that the flashing lights and strobe effects during the film could cause seizures for people with Photosensitive epilepsy. Whilst the film has moved from the big screen there is still the chance that it could have the same effects when watching the film on DVD or via a streaming service or television.
A statement from American charity Epilepsy Foundation says Walt Disney Studios and the Epilepsy Foundation are working together to advise Photosensitive viewers to use caution when watching Star Wars The Rise of Skywalker. The film contains several sequences with imagery and sustained flashing lights that may affect those with Photosensitive Epilepsy.
Source Epilepsy Action
Do you have a family member or a friend with epilepsy or maybe you have epilepsy yourself.
We are hoping to hold a social event in April where people with epilepsy can chat to other people with the condition.
To hold this event we will need enough people to show an interest in coming along so if you would like to attend please phone our helpline on 01473 461407.
There will be advice on claiming benefits, sign posting to other useful Organisations and access to our own free library of Books and DVDS
Are you suffering from seizures that your medication alone can’t control?
when medication can’t provide the control you deserve, it’s time to consider other options. 1 in 3 people with Epilepsy have the kind that is resistant to anti-epileptic drugs.
To find out more about VNS talk to you Epilepsy Nurse or Neurologist about drug resistant Epilepsy(DRE) and VNS Therapy. You can also download the DRE Discussion Guide designed to help you have a conversation about the next steps in your treatment plan.
Please note having a VNS fitted is no guarantee of stopping or reducing seizures the same as medication it can help some people and not others.