Epilepsy News: April 2018

OK! I’m happy to say I’ve got epilepsy news here for you today. So, what stories are involved? Well, we’ve got further news to exploit regarding the ongoing story of how Alfie, the 6-year-old with epilepsy, whose bid to receive cannabis oil treatment could be making progress soon.

One other article managed to catch my eye this month. During my time with a sick note, I managed to find out how important one particular anti-epileptic drug has proved to be for myself. I’m happily taking it now and can’t be bothered worrying about any side-effects. It can’t lead me to any other problems either. However, not everybody feels the same way about it.

There has been more news about the approval of new marijuana-derived drugs in the USA too. CNN talked about the FDA’s vote in June regarding whether to approve Epidiolex, an oral solution for the treatment of severe forms of epilepsy.

But I have already written quite a bit about the spread of cannabis treatment in the USA, so it’s not something I’ve chosen to tell you more about this month.

Little Man Alfie has Grabbed Hold of our Government

The family of epileptic boy Alfie Dingley are now only hoping that it’ll be a matter of days before he can receive the cannabis treatment he desperately needs and certainly deserves.

Alfie has a very rare form of epilepsy known as PCDH19. In fact, it’s so rare that it affects just nine children worldwide. It involves clusters of catastrophic seizures that are unresponsive to any anti-epilepsy drugs. There’s no doubt that Alfie is living with a dangerous type of epilepsy.

However, cannabis oil treatment has proved to be of great use to Alfie. His family moved with him to Holland back in September to receive the treatment. It’s incredibly affective; it cut his seizures down from up to thirty per day to just one every month.

But since then, it’s been difficult for the family to maintain a place in Holland due to their funds fading away, and difficulty when trying to gather health insurance. The government has since denied a plea to grant Alfie a licence to use cannabis oil.

But time has since continued. Many people are supporting Alfie’s need for the treatment. After a lengthy campaign, his doctor has finally handed over a petition signed by 380,000 people urging the government to give Alfie access to the drug he needs.

The online petition continues to be signed, and they’re looking to reach a submission total of one million people. Along with the general public, a variety of MPs have now also backed the campaign across the UK, along with celebrities such as Russell Brand, Richard Branson and Joanna Lumley.

Most notably of all, Sir Patrick Stewart is another celebrity who is supporting Alfie. After using the treatment to treat his arthritis, Sir Patrick knows how useful medical cannabis can be. Now living in California, the 77-year-old returned to the UK last month to meet Alfie and his family. He believes there has never been a stronger reason to legalise the treatment in the UK.

Sir Patrick Stewart
After using medical marijuana to treat his arthritis in California, Sir Patrick Stewart very much supports the case of Alfie and his family

There’s no doubt that I agree with the former Star Trek captain. And I know I’m not alone. If you’d like to make an effort for Alfie, then you can still sign a petition to legalise the treatment in the UK.

You can either sign a petition on change.org or go to endourpain.org. Both could be beneficial not only to Alfie but many other people with epilepsy that is proving difficult to treat in the UK.

Epileptic People are More Likely to Die from ‘Unnatural Causes’

When put in comparison to people without epilepsy, research shows that people who have epilepsy are more likely to lose their life due to ‘unnatural causes’. Studies were made at the Universities of Manchester and Swansea, with Dr Hayley Gorton from Manchester University conversing with Epilepsy Research UK.

He made it clear that they were well aware that epilepsy leads to an increased chance of premature death. However, research with such detailed examination of unnatural death had not been carried out until this point.

After a recent, more detailed examination of specific types of unnatural death, researchers found some quite disturbing information for people with epilepsy. When people without epilepsy are compared with those suffering from the condition, studies showed that people with epilepsy are twice as likely to die by suicide, and three times as likely to die accidently.

However, it’s better to remember that now research has proven this to be the case, we can do a bit more to avoid the problems that occur.

Talking in more depth about the study via onmedica.com, Dr Hayley Gorton said: “Because of these risks, it’s important that people with epilepsy are adequately warned so they can take measures to prevent accidents.

“We urge clinicians to advise their patients about unintentional injury prevention and monitor them for suicidal thoughts and behaviour. We would also advise doctors to assess suitability and toxicity of medication when prescribing medicines for other associated conditions to these individuals.”

Sodium Valproate Should NOT Be Banned, Scientists Argue

This month, researchers have argued that due to the problems it could cause, Sodium Valproate is a drug that should not be banned during pregnancy.

Although it can lead to issues for the children of pregnant women when their child is born, the controversial medication sodium valproate may be the only effective drug some women can take. If you’d like to know more about the potential issues it can cause a child, then just take a look at September 2017’s Epilepsy News.

Although I am a man, I was maybe a little phased by the negative thoughts of others when I talked to my specialist about sodium valproate around October last year. The side-effects it causes me (hand tremor, weight gain) also pushed my actions into place.

I decided to stop taking the medication. But unfortunately, I found out after reducing and finally ridding myself of Epilim that the combination of sodium valproate and lamotrigine must have been working well together.

Epilim Medication Strips
It seems like I might be sticking with Sodium Valproate for quite some time

Once removed from my system, I couldn’t think properly. I started having seizures every day, not every two or three weeks as they usually do. Since reintroducing it, I’m feeling much more like myself again.

Because of my problems, I certainly understand what researchers are saying. To ban the drug is perhaps a little extreme. Without the drug, some women might find their epilepsy to be much more life-threatening. Personally, I think women should be made well aware of the issues that could arise for their children, but when pregnant they should perhaps have the choice of whether to take the AED drug or not.

MyCareCentric Epilepsy Could Save NHS £250m Per Year

A new integrated care solution called MyCareCentric epilepsy is looking to improve the lives and treatment of people with the condition. They believe they can do this by providing a combination of wearables, shared care records, machine learning and data analysis.

The programme was launched in Poole back in 2016. Today, the consortium claims that after suffering from a stroke, medical professionals have made an 80% reduction in the amount of time it takes to respond to individuals. 30% fewer hospital admissions were also made.

As well as this, a three week reduction time for clinicians has been made when responding to seizures that were recorded via the app. Up until now, patients have usually needed to wait until their next appointment with their specialist doctor to receive updates on their condition.

The benefit of using this technology would mean that epilepsy can be managed more often whilst at home. When seizures occur, they can often be detected by an activity-tracking wearable. MyCareCentric will then send real-time alerts to carers and inform clinicians too, who can then send guidance of their to own via the app.

MyCareCentric Epilepsy certainly sounds interesting to me. In November 2017, the care solution won the ‘Best app for patients and carers’ at the EHI awards. And with the use of this sort of equipment, not only would the NHS be saving money, but reducing the number of patients hospital staff have to manage every day in outpatient appointments as well.

Brexit Health Alliance urges Brexit Negotiators to put Patients First

Although this isn’t news that only people with epilepsy should be aware of, it’s good to know and hope that we have a healthy future for people in the UK when we finally leave the EU.

The Brexit Health Alliance has warned that people may have long delays in getting new medicines as a result of Brexit. Research cooperation and access to clinical trials may also be affected, according to the organisation.

The main message that they want to make is clear enough: it’s about what’s best for the patient. I think I agree with them on this.

The EMA is set to move its headquarter’s from London to Amsterdam – a much more appealing place to live if you’ve got difficult-to-treat epilepsy

They want Brexit negotiators to work towards a deal where research data can be shared, and everyone can take part in medical trials. But problems could occur now that the Euro Medicines Agency (EMA) has announced its intentions to move its headquarters from London to Amsterdam.

Regarding epilepsy, the EMA has recently been implementing new safety measures around the anti-epilepsy drug sodium valproate. As well as that, an application has now been made for them to approve Epidiolex, the cannabidol medicine that is being put under the same measures by the USA’s Food and Drug Administration in June.

To Wrap It Up…

I hope you enjoyed my overview of the epilepsy news this month. It’s my first time back for a while, so if you didn’t like the sound of my voice on here, then just say, and I’ll try and do better next time!

Take care.


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