Epilepsy News: June 2018

Epilepsy News has sparked back into life. Although I’ve extended the weekly release by a couple of days, I was never going to let this weeks news pass.

The reason for this? Well, it’s my 12th release! I’m happy to say I’ve been doing this for about a year now, and I hope you’ve enjoyed my work.

But I also couldn’t ditch this week’s epilepsy news for other reasons. This week, for the first time since I started the site, I noticed that an article relating to epilepsy had become the main headliner on the BBC website. This isn’t common, but there’s no doubt that it deserves the spotlight. It’s a matter that needs to be dealt with as soon as possible.

Of course, don’t be fooled. One main website article doesn’t mean that the UK’s Government and media are now giving disability the attention it deserves. There’s still a lot of work to be done, and I’m doing more work to get it sorted once and for all. Run a Successful Charity arrived on Monday, and it’s an interesting book to read.

It’s important for me to tell you all about what’s happening in the world of epilepsy. I better tell you plenty more about the big headliner, although the BBC might be repeating a lot of info you’ve heard on here before. I’ll only try and tell you what you need to know.

And still, don’t worry; there are a few other seperate important stories regarding epilepsy to tell you about too.

The UK should FINALLY be Legalising Medicinal Cannabis

It’s been quite a while since I first started talking about legalising medicinal cannabis in the UK. In fact, it was one of the topics in this blog’s first monthly news articles. But one more event has gathered my attention. For once, in fact, it’s gathered the attention of many people.

The first thing I want to mention now is one story about a boy called Billy. News that his mother Charlotte Caldwell had her son’s much needed cannabis oil confiscated at Heathrow airport also attracted a little attention on 11 June.

Billy doesn’t have the same type of epilepsy as Alfie Dingley. But like many other people with epilepsy, it’s a great tool to keep his epilepsy under control. Last year, Billy somehow became the first child to be prescribed medicinal cannabis oil on the NHS.

But after an “honest and genuine” conversation, Charlotte Caldwell didn’t have Billy’s Cannabis Oil returned by the Home Office. After that, it didn’t take long for Billy to be admitted to hospital after his seizures intensified. He was later granted a 20-day licence for the drug after doctors made it clear that it was a medical emergency.

Billy’s new story led the way for more politicians to start supporting the legalisation of medicinal cannabis. Former Conservative leader Lord William Hague called the home secretary to help start making things happen.

Lady Meacher is the chair of the parliamentary group for drug policy reform, and said the move was a “no brainer” which could benefit many people.

Middlesbrough MP Andy McDonald has also since written a letter to home secretary Javid Savid. He lost his son Rory after he suffered from an epilepsy seizure in 2006, aged just 16-years-old. His 23-year-old son Freddie also has epilepsy and needs 24-hour care.

It’s taken a lot of effort to get something moving in the Houses of Parliament. According to Mr Savid, the review of cannabis use for medicinal purposes will take place in two parts.

Houses of Parliament
Surely they can’t hold this up for much longer now

The first part will make recommendations on which cannabis-based medicines offer medical and therapeutic benefits to patients. The second part will consider whether changes should be made to classifications of these products after assessing “the balance of harms and public health needs”.

Alfie Dingley has also now been granted his long-overdue licence to use cannabis-based drugs. This is great news for his family, who are obviously so happy that Alfie can continue his life with much less worry. I was one of many people that signed a petition to get the UK Government to do this.

I’m generally not keen on listening to the language that politicians usually speak. But Lady Meacher made a great point about what medicinal cannabis is all about recently. She compared it with morphine, and said it was “much, much safer, less addictive and has much, much less in the way of side effects”.

I’m happy to hear that Alfie has gathered his licence, but he is just one child. Many more children and adults will benefit a lot from the treatment. I only hope the home office’s process of getting it all sorted won’t take too long now.

The Incredibles 2 isn’t as Super as the Reviews might say

Although photosensitive issues don’t always arise for people with epilepsy, sometimes they do. And although people don’t always love watching new films on a cinema screen, sometimes they do. When kids see a film advertised that looks exciting, parents grant them their wish to see it more often than not.

However, quite a few children in the UK will be moaning and asking questions about why they can’t see The Incredibles 2 next month. Despite it being so popular and receiving excellent reviews, there are a lot of flashing images displayed in the Disney-Pixar animated film. Although Disney never mentioned this before it was released, cinemas in the US have now been forced to display seizure warnings for people with photosensitive epilepsy.

The Incredibles Dress Up
Since its release, The Incredibles has become a very popular Disney-Pixar animation

Early after its release, various people went to enjoy the movie but had seizures in America. Along with cinema’s in the USA, their largest epilepsy charity the Epilepsy Foundation has also issued a statement advising “viewer caution”.

But Twitter has been the main place talking about the potential issues that could arise when watching The Incredibles 2. User’s simply expressed their complaints, mainly towards Disney for not putting in some warning for people with epilepsy. Other users were simply sad that they wouldn’t be able to take their children to see the film.

Disney is yet to comment.

The Brainstem and Seizures could be more Linked than Believed

Memory impairment and a lack of concentration and focus are cognitive problems aren’t uncommon among people with epilepsy. These problems have certainly bothered me at times. But these problems are more common among patients who have been diagnosed with temporal lobe epilepsy who also frequently lose consciousness.

Seizures typically originate in the temporal lobe or other areas in the cortex of the brain. However, despite the brain stem rarely being researched, it seems it might be more associated with epilepsy than researchers once thought.

Repeated seizures appear to reduce brainstem connectivity, which possibly leads to the neurocognitive problems often associated with temporal lobe epilepsy.

After recent studies from Vanderbilt University, Professor Englot stated: “More and more, we’re learning that epilepsy is a condition affecting widespread brain networks, not just the temporal lobe.”

Are there any Long-Term Benefits to Epilepsy Surgery?

Epilepsy surgery has been used to treat epilepsy that does not respond to medication for many decades now. However, little has been researched to find about the long-erm success of the surgery. Recently though, researchers sought to determine whether epilepsy surgery would provide long-term improvements.

A large specialist hospital in the UK recently designed a study to find out if epilepsy surgery has been successful in the longer-term. A study in 2001 showed that almost half of patients having epilepsy surgery should expect to be free from seizures for one year following it. However, how long it lasted after that was unknown.

Post Brain Surgery Crown of Head
I know some people won’t like to look at this…

Published results arised after looking at data supplied by 284 patients who had epilepsy surgery at their hospital over the past 27 years. The average age of those who received the surgery was 33 years old. The average age that the researched patients developed epilepsy was 13 years old.

47% of patients had made it to the five-years-without-a-seizure mark. 38% of the patients went seizure-free for ten years.

Although patients did still take medication after the surgery took place, the average number of AEDs that the patients took was only one.

The Surgery and Study weren’t all Successful

Not all types of epilepsy were equal when it came down to long-term success. Patients with a condition called hippocampal sclerosis were more than likely to have a successful outcome. Successful outcomes are also more likely to occur among patients who had a part of their brain’s temporal lobe removed.

Weaknesses of the study were also clear. Little information was made available about separate types of epilepsy surgery, as well as the 15 patients who also died in the years following it.

Thanks for Reading

Sorry if you’re signed up and were shocked to find you hadn’t received your weekly newsletter on Wednesday. I’m thinking my fans probably dealt with the situation well enough. I actually mentioned the later day of release in my previous post on Sunday – but at that point I said it’d be released on Thursday, and not Friday. But I’ve been busy!

And remember, 12 months have pretty much passed since I started making more of an effort with the blog. You’re getting it all for free! I’m proud to say that well over 60 posts have now been published. I’ve also been happy to pick up plenty of likes and compliments via WordPress and Twitter along the way too.

As always, thanks for reading this, and take care.

Brain Zipper by Nathanael Burton / Meeting The Incredibles by Loren Javier

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