There was a lot of news to choose from this month. Researchers have perhaps proved their abilities more than anyone, although the brave investigation of one man having brain surgery maybe gets my biggest shout. Another epileptic individual proved her worth by completing a hefty hike, and volunteers worked well to produce a secure shelter for children with epilepsy in the USA.
Negatives can’t be ignored of course. Experts in America seemed pretty surprised and frustrated by a bigger than expected figure, and the UN discredited the British government by claiming that disability is something the Tories don’t care enough for.
Gaining Motivation through his Brain with Stimulation
If I had to choose, I would say Chris White sparked my interest more than anybody this month. He’s a man who suffered a stroke at birth and had his first EEG test the day after. Although he was fine up until the age of 15, seizures started to occur and happened around five times a day.
Typical brain surgery to remove the part of his brain causing his seizures was ruled out, so Chris did some research of his own. He came across the brain stimulation device that has only ever been used at Mayo Clinic in Rochester, Minnesota. At that point, he was ‘sick and tired’ of taking medication that wasn’t working, contacted the hospital, signed up for surgery and took a leap of faith.
Unlike other patients, the electrodes used were placed in his brain, rather than just on top of it, and continuously stimulate the brain’s insular cortex. He had the surgery in May 2016 and when returning for an EEG test was so happy to say that his life had since performed a total u-turn. Unlike before, he now has a full-time job and has been seizure free ever since the surgery.
Cortical stimulation has been performed around 20 times at the Mayo Clinic, but a 2016 study indicates its positivity. 77% of patients reported improvement in both epilepsy severity and life satisfaction. And while most patients went on to experience a decent reduction in seizures, 44% have since been seizure free.
How long we’ll have to wait until the NHS provides this, I do not know, but I won’t be holding my breath. However, other countries are out there to be seen by all – I’m sure those who need it most will be willing to hop on a plane and hassle a doctor. Find out more about Mayo Clinic here.
Keeping up the Good Research
Further acclaim should be sent to the US with research at the University of Minnesota proving pretty handy. It seems most cases of newborns with epilepsy have an identifiable genetic cause, and because of this, genetically testing all newborns with epilepsy should now be considered.
Knowing the genetic cause is a guide for treatment, provides peace of mind for the family, and also means that parents can receive more informed genetic counselling for future pregnancies. Click here if you wish to read more about it.
Back in the UK, researchers in Exeter are looking to identify the areas of the brain that contribute most to epileptic seizures – with the use of mathematics.
This is complicated stuff to summarise, so to read more about it please just take a trip the Epilepsy Research article that explains it in depth. The important thing to know is that if it’s successful, the 50-60% success rate of epilepsy surgery will improve, and reductions would also take place with post-surgery side-effects.
Unseen Areas are the Best to Endeavour
Getting kicked off a plane can be stressful anyone. And it also seems much less appropriate when you’re just kid and have had an epileptic seizure.
These incidents happen more than people tend to think. Susan Linn, the president of Epilepsy Foundation of New England, hears plenty of these stories first-hand, and accordingly offers children with epilepsy an opportunity to find a much more positive summer because of it. EFNE also hosts The Purple Camp, a special Sleepaway Camp which started nine years ago in East Brookfield.
The weeklong camp gives children with epilepsy the chance to find more fun and freedom because it’s designed to specifically support their needs throughout.
Located at the YMCA Frank A. Day Camp in East Brookfield, it was made possible through 18 nurses who volunteered to provide medical services if needed. 35 children attended camp this year and mainly travelled from the States of Maine and Connecticut.
Now married to the EFNE president, former American ice hockey player Chanda (Gunn) Linn is another celebrity to have had epilepsy. She now works primarily as a youth programming specialist for the charity and also volunteered at the camp this summer.
Offering children with epilepsy the chance to network like this is great news to know. It’s aimed at those between the ages of 8 and 17, safely involves plenty of water activities being made available, and leads to friends being made that stay social when the one-week camp comes to a close.
A shout also goes out to Francesca Turauskis, an epileptic writer from Hook, Kingston-upon-Thames. She took on a credible 500 mile walk through the Spanish region of Camino de Santiago to raise money for Epilepsy Action and the British Heart Foundation.
She was diagnosed with epilepsy in 2015 and has been seizure free for two years. Now that her seizures have settled she wanted to prove that she’s still got some mobility. Before taking her first step in Spain, she managed to raise around £700 for epilepsy charities and around £300 for the BHF. Still hoping to raise more, you can access her JustGiving site here.
A Couple of Ups & Downs in the NHS
The first story relating to health this month involved the Welsh Government alone and simply looked to reveal the publishment of the Neurological Conditions Delivery Plan for 2017-2020.
The plan helps people with neurological conditions like epilepsy, celebral palsy and Parkinson’s disease by getting them a quicker diagnosis and effective care. It’s said to help sufferers live with their condition, and aims to raise epilepsy awareness, improve information and support further research.
However, the main news to show in Epilepsy Action’s Epilepsy Today mentions a lot of tablets out of stock in the UK.
If you need an AED that’s been named on a list of what’s lacking, it’s best to have a word with your pharmacist to check that’s the real deal first. If so, make an appointment of some sort with your doctor. Professor Ley Sander, Epilepsy Society’s medical director, has said that patients should be able to be temporarily transferred over to different forms of certain drugs if needed.
Yes… There’s Loads of Us.
Another main headline about epilepsy in the USA was that the number of people with the condition has now risen to over 3.4 million. They concluded that the increase in cases was primarily due to growth in population, but warn it places increasing pressure on the healthcare system. It also shows more need for programs to help integrate people with neurological problems into society.
One Final Flaw Point to Fight for Disability
Since the BBC apparently chose to say nothing about this, I needed to step up. Generally, the Government is something that I don’t think about; I like to stay positive and keep my focus on the highs of life. The highs of life never involve the British Government.
But after reading an article and being made more aware of decisions made by ministers, I think it’s important that I say something to stand for the rights of people with disabilities.
Theresia Degener recently stated that the UK has “totally neglected” disabled people. Degener leads the UN’s Committee on the Rights of Persons with Disabilities (CRPD), and her criticism came two days after a grilling of the UK Government in Geneva.
The Government was told: “Evidence before us now and in our inquiry procedure as published in our 2016 report reveals that social cut policies have led to a human catastrophe in your country, totally neglecting the vulnerable situation people with disabilities find themselves in.”
Looking back into 2016, it’s easy to see where the Government went wrong. Judges have ruled that three of the Government’s flagship welfare policies are illegal because of the impact they have on people with disabilities, as well as single parents.
In January 2016, “bedroom tax” was declared unlawful because of its negative impact on children with disabilities and victims of domestic violence. Sanctions imposed on people who refused to take part in the “back to work” schemes were also discredited three months later. In June 2017, the High Court also stated that the Government’s benefit is unlawful and causes “real misery for no good purpose”.
Although a government spokesperson quoted that “the UK is a recognised world leader in disability rights and equality”, the CRPD’s repporteur for the UK Stig Langvad said he was “deeply concerned” about the Government’s failure to act on the committee’s previous report.
The committee is currently investigating the UK’s progress in implementing the UN Convention on the Rights of Disabled People. This is part of a periodic review all nations must undergo after their agreement to sign up to the convention.
To cut it short? It’s been much more busy. The negatives came more consistantly too, and along with any epilepsy-related problems, a breach of disability rights is something I felt a strong need to stand for.
It’s great to see that research is showing routes to further management of epileptic seizures, and I only hope that social events to offer better summers to young sufferers of epilepsy can happen in my own country. If they are happening, and I just haven’t come across your event yet, then feel free to contact me about it. I’ll be very much willing to chat.
Anyway, keep your heads held high fellow people with epilepsy – life can be tricky, but we’re filling the cup more every single day. Thanks for reading.