Epilepsy News: November 2017

Epilepsy News: November 2017

Despite feeling quite focused on other projects this month, I’ve still kept an eye on what’s been happening in the world of epilepsy. On the whole, I’d say that it’s been a positive period for many.

Although it has only been publicised in the US, the Epilepsy Foundation has talked about how November happens to be National Epilepsy Awareness Month. People are always willing to boost epilepsy awareness throughout the year, but what’s been achieved this month seems more suitable for the events advertised in America.

Although the US might be able to boast a slightly better era, two important courtroom cases have now been settled on both sides of the Atlantic.

One will lead to epilepsy treatment advancing further in the America, with the use of a previously illegal substance to treat epilepsy now being considered acceptable in another well populated US state. And when it comes down to income allowance for people with disabilities, higher courts have concluded that rules of the British system certainly need to be changed.

A negative experience for the family and friends of one person with epilepsy is also mentioned. It gathered a lot of attention from the media in the UK, but I only wanted to pay my respects to those affected by the passing of somebody who probably lost their life due to epilepsy-related issues.

Chicago’s Hamilton Star Shoots Up for Epilepsy

November’s news started in Chicago this month. Actor, singer and performer Miguel Cervantes plays the role of Alexander Hamilton on stage, and decided to devote his musical’s suave pose in support of epilepsy awareness and research.

The reason for this combines two true stories of the wonder and woe consumed by father Miguel, mother Kelly, and their daughter Adelaide Cervantes, who was born two years ago.

A year and a half ago, Miguel auditioned for the lead role of Alexander Hamilton in Chicago’s production of Hamilton, a popular musical throughout the United States. However, despite receiving the role of his dreams, the Cervantes family felt a great deal of despair after their daughter Adelaide was diagnosed with a severe form of epilepsy known as Infantile Spasms (IS).

Affected by their daughter’s illness, Miguel and Kelly have both come to learn much more about epilepsy. Like everyone else, they see it as a condition that is still underestimated, underfunded and misunderstood by many people in society. Because of this, the couple has devoted much of their time towards raising awareness and funds for epilepsy research.

Hamilton Pose
The one-armed Hamilton pose, frequently used in the popular American musical

If you head to myshotatepilepsy.org, you’ll find you have the opportunity to upload a photo or video with the look of Hamilton’s famous pose in the musical. With a look of great dignity, it simply involves one arm and index finger pointing up as high as you’d like.

You then go on to donate money that goes towards two conjoined American epilepsy charities – Epilepsy Foundation and CURE (Citizens United for Research in Epilepsy). After that, you can go on to share ‘your shot’ on social media using #MyShotAtEpilepsy and are encouraged to tag three friends to take on the challenge themselves.

Focus Reforms on British PIP’s

On 2 November, British people with epilepsy also managed to reach high enough to push the Conservatives a few steps down the ladder. By winning a court case against the British government, an estimated 10,000 people with disabilities are rightfully due to receive more money by 2022.

PIP’s (Personal Independence Payments) are designed to help disabled people pay for the costs of their condition, and replaced Disability Living Allowance (or DLA) in January 2016. As I explained in my article earlier in the month, it was clear that the rules set to receive PIP’s simply weren’t acceptable.

The DWP has been wrongfully refusing a lot of people with disabilities the money they deserve; especially people with epilepsy. People with epilepsy have had their payments lowered and rejected more than people with another disability.

And why was this?  Well, to put it simply, their rules were wrong. When it comes down to disability, it’s not about how likely potential harm is – It’s about how serious it could be.

PIP Information Booklet
The PIP information booklet is one thing that needs to be reviewed by the UK Government

It’s not uncommon for people with epilepsy to be well cared for by a parent, partner or carer. The sufferer’s condition is often tracked because of the severe events that could well occur without their help. And safety always comes first, sometimes stopping people from being educated, working and socialising. People in this situation with epilepsy should always be paid PIP’s – but in certain circumstances recently, they’ve only been rejected.

Hopefully, people who have had issues in receiving PIP’s with all disabilities are due to be given adequate funding with the new rules set in the future. However, there’s more work to do. Epilepsy Action said it is pleased with the changes but is concerned that they don’t go far enough. A lot of questions still need to be answered to make sure that people who need PIP support will receive it.

The government is currently being urged by many to undertake a full review of the assessment plan as soon as possible.

In Some US States, Medical Cannabis Isn’t Far Away

Before writing this article, I’ve already mentioned the stressful actions of others who have been looking for a type of treatment for epilepsy when no other reasonable options are available. In the past, people have had to sacrifice their lifestyle regimes and have sometimes broken the laws of their country to use it as an epilepsy medicine on a regular basis.

What’s known as cannabidol (CBD) oil and medical cannabis have been beneficial for many. Back in September’s epilepsy news, I included a story of how five-year-old Alfie Dingley was having many seizures daily and being fully cared for by his mother in the UK. He was losing out on education and a social life, and his mother had to sacrifice her work to take care of him.

However, I hope they’re now settling into their new home in the Netherlands. When I published the post, they were just about moving to the Dutch city of Den Haag. The move was to gain more access to medical cannabis for Alfie because when used with children, it has often been successful when trying to help sufferers manage seizures when they have found little use in standard AEDs.

Medical Cannabis Lab
Medical cannabis plants have been growing for months in Texas

People with epilepsy have made another step towards legalising medical cannabis in the United States. Medical Cannabis is legal for legitimate sufferers in California (the most populated state) and 29 other US states. And now Texas (the second largest state by size and population) is due to give access to those who need better treatment to improve their lives. As well as that, 12-year-old girl Alexis Bortell is also looking to sue Jeff Sessions and the DEA for forcing her family to move to Colorado from Texas when she was taking the drug t control her epilepsy.

Illegal in the UK, medical cannabis and CBD are treatments that could be useful for many. For some reason though, it is not often mentioned on Britain’s main epilepsy charity websites. Too busy fighting for PIP? Perhaps. But, with the use of cannabis for medical purposes being legal in 30 US states, having some form of the substance available when needed in the UK only seems fair to me.

It’s Helping Out – the Handy App

One fact that’s still not explained enough to new sufferers of epilepsy is that there is always the possibility of sudden unexpected death in epilepsy. More often referred to as SUDEP, another important fact is that 42% of these cases could be prevented.

But a positive action has been pushed forward in Cornwall, where they’ve recently managed to half the amount SUDEP cases. A simple checklist and application have been made available on smartphones that give people with epilepsy a chance to identify and understand their risks.

After learning more about this on the Channel 4 website, they didn’t name the application, but I came across ‘Epsmon’ when searching for epilepsy applications on my iPhone. It analyses your situation and could be useful. Speaking to all people with epilepsy, I recommend downloading and installing it as soon as possible.

On 17 November a campaign was launched to highlight the significant number of young people who die suddenly from epilepsy. More information on this is available on the SUDEP Action website.

Difficult Times for an Unfortunate Family

In the UK, the disappearance of teenager Gaia Pope brought a fair bit of national news into the spotlight, after the 19-year-old who suffered from epilepsy disappeared without her medication. Eleven days later, her body was discovered, and despite initial arrests police have now revealed that her death is being treated as unexplained.

Many tributes have been paid to Gaia, who has been described by her sister Maya Pope-Sutherland as “my everything”. Her sister Clara stated that she was only going to speak of her sibling in the present tense, and referred to her as the “absolute light of my life”. As well as that, she continued by implying that she was “So beautiful, so emotionally wise and intelligent and so passionate and artistic and creative and understanding.”

The initial arrests have been criticised by Greg Elsey, whose son Paul, grandson Nathan and ex-wife Rosemary Dinch were all taken into custody but later released after no proof of harm were found on Gaia’s body. However, he did say that his heart went out to the teenager’s family.

Last seen on 7 November 2017, my heart goes out to Gaia Pope’s family and friends too; may she rest in peace.

4-1 to the Positive, but the Game isn’t Over.

Good news beat the bad by three stories this month. Is it possible to get good stories coming all the time, and raise epilepsy awareness to a level that will bring total equality? Probably not. But when problems arise, we need to be ready to push them off the cliff as quickly as possible.

Right now, fair PIP’s aren’t yet available; but the bigger our team, the stronger we’ll be. We’ve got to work hard to bring the right allowance to people with epilepsy (and hopefully all other disabilities) as soon as possible.

Coming up with more ideas to raise money and gather more attention from others is useful too. The Cervantes family used Miguel’s fame to set up a money raising website, putting nothing but their heart into raising epilepsy awareness.

I’ve come up with an idea of my own too; it hasn’t been successful yet, but I think it will eventually gather the attention of plenty of people with epilepsy. You’ve got to head up to the menu above and click ‘Subscribe Today & Help Raise Epilepsy Awareness’ to learn more about it.

Right now, I’m just going to help other people as much as possible. As time continues, I’m sure I’ll find my way to network well with others, become a key part of the epilepsy community and do my best to help other people raise epilepsy awareness worldwide. Keeping my readers updated on every month’s epilepsy news is obviously a must-do for you all as well.

 

Medical Cannabis by Rusty Blazenhoff / Hamilton by Invisiblecompany
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