With just 28 days in February, this month’s Epilepsy News is with us a little earlier than usual.
If a significant event pops up in the final seven days of February this year, then I’ll try and talk about it in next month’s edition as well. But with topics of technology, treatment, campaigning and design involved today, I’ve got plenty of interesting stories to tell you about what’s been happening around the world with epilepsy.
Seizure Prediction is Looking More Likely
Researchers in Melbourne recently became more excited about the advancement of new, seizure predicting technology. By recognising patterns in the brains electrical activity, algorithms have been trained to pre-empt epileptic seizures.
At St. Vincent’s Hospital at the University of Melbourne, senior researcher Dean Freestone, PhD, and chair of medicine Mark J. Cook, MD, have now launched a company called Seer Medical. Here the new technology can hopefully be pursued with patients implanted with it later this year.
Likely to be contained in a chip inside a wearable device like a wristband or bracelet, the new forecasting technology would probably work best for people who typically have seizures about once a week.
For me, this new technology sounds interesting. I have a seizure approximately once every two weeks and reckon it could become so useful for myself. However, if people have seizures once every hour, or if the seizures are too infrequent, researchers have stated that it is difficult to train the algorithms.
But by knowing when seizures are coming along, I can understand why people who have tested this technology have felt more comfortable doing everyday activities. After being tested, people also claimed to benefit from improved sleep and decision making too.
Knowing when my seizures were due would be a handy tool for me and the people who have to keep an eye on me when they occur. It’d give me the chance to put myself in safer places beforehand, and even find ways to prevent them.
Being designed in Australia, I only hope we don’t have to wait too long before we have some form of the technology made available in the UK.
Genomics Set to Speed Up Epilepsy Diagnosis
Right now, epilepsy diagnosis can be completed with the use of various scans, including EEGs, CTs and MRIs. Although they work, these scans don’t give doctors much information regarding the type of issues their patients will be facing with their epilepsy.
However, genomics interpretation software company Congenica has now teamed up with FutureNeuro, an SFI Research Centre for Chronic and Rare Neurological Diseases. This new partnership is working on a programme that will give doctors a much easier way to make a diagnosis of genetic epilepsy.
With the use of genomics, doctors may now be able to get a better and quicker view of the many challenging possibilities of epilepsy. This would lead a way to start individualising treatment and prognosis in the clinic. All in all, the earlier diagnosis would see positive impacts on the patient and their family.
Speaking recently, Congenica’s CEO, Dr David Atkins said: “We are excited by what this collaboration could mean for patients and their families around the world. The types of genetic mutations that this project will focus on are thought to be at the root of as much as 40 per cent of childhood epilepsy.”
I don’t suffer from genetic epilepsy, but wish this new partnership well in finding what they need to bring better diagnosis to children who may gather the condition through their mother, father and other family members.
An Update on Alfie
Back in September, I told the story of Alfie Dingley, a 5-year-old with epilepsy whose parents were due to take him to the Netherlands so he could receive cannabis oil treatment to stop his daily seizures.
After about five months, Alfie has now returned because he has no health insurance in another country. Now his parents are back in the UK, they hold a great passion for gathering their son a medical cannabis licence. However, their recent request was denied by the Home Office, who said the drug “cannot be practically prescribed, administered or supplied to the public”.
Alfie’s mother, Hannah Deacon, is clearly very much upset by the response. Right now, Alfie suffers from up to 30 violent seizures a day, but when receiving treatment in the Netherlands, he went for 24 days without a single attack.
Speaking on BBC News, Hannah told presenters that she wanted to speak to MP’s Amber Rudd and Jeremy Hunt, saying: ‘I want them to know my reality with my son in A&E every week, watching him have a seizure, watching him go purple; wishing that he will live.”
I know this isn’t positive news to tell my readers about. But it is another clear reason that I wish to raise awareness of epilepsy, and speak out for people with difficult health conditions.
Medical cannabis won’t just be useful for Alfie – it was recently made more legal to use in various states across the USA. It doesn’t just help people with epilepsy and will be helpful for many other people with various health problems in this country as well.
Avocado Diet Helps Manage Epilepsy
After struggling to stop up to sixty seizures occurring every day with conventional medication, five-year-old Leafy Liu now only suffers around four seizures a year. Her patterns have improved greatly with her new ketogenic diet, which has had her parents spending £1,200 and Leafy eating approximately 3000 avocados – at least two a day for the last four years.
The ketogenic diet was discovered by her parents Justin and Claire after their daughter first started having seizures when she was six months old. They were scared by her first seizure, which lasted for 25 minutes and led to her being taken to the hospital.
As time continued, Leafy’s seizures became more frequent, with 60 minor seizures sometimes occurring in a day, and her longest seizure lasting for around 45 minutes. Because of the side-effects involved with anti-epileptic drugs, her parents searched online for an alternative solution to their daughter’s issues.
Here they came across the ketogenic diet and were quickly stunned by how effective it was. High in fat and low in carbohydrates, burning fat for fuel is said to be better for the brain. Within two days, they started to see big changes occur, and Leafy moved quickly from having up to two major seizures a week to having just one seizure a month.
Although a lot of fruits are avoided with the ketogenic diet, it seems to have started their daughter Leafy’s passion for avocados.
Speaking from their home town of Loughborough, father Justin said “The avocado has been a real staple; she absolutely adored it from the word go.
“We’ve spent a fortune buying them, but it’s been worth it. They are wonderful.
“It’s amazing. When I see what other children are eating for lunch, and compare it with what Leafy has, I think it’s so much healthier this way.
“When she was at her worst, I could never have envisioned that avocado would be the thing to help her through, but that’s how it’s turned out.
“We’re just so thankful that we discovered the diet when we did because it’s changed all of our lives for the better.”
Teenager’s Poster Keeps an Eye on Invisible Conditions
Out of all the individuals this month, I’ve been most impressed by the poster design skills of 18-year-old Thomas Bell, who suffers from epilepsy, dyspraxia and hemiplegic migraine. Tom was born with epilepsy, but after having to live with all of his invisible health conditions, he’s designed his poster campaign through Fixers, the national charity that looks to give young people a voice.
As a whole, Tom intends to shine a light on invisible conditions. Although better controlled now, Tom used to have to manage migraines as often as twice a month. Living with epilepsy, Tom was bullied by his peers in school, who used to flash lights in his eyes and say “I want to see you have a fit.”
He believes the reason for them doing this was because his conditions are invisible, and they didn’t take them seriously. These frustrating times have led Tom to create his poster, which involves a cartoon of himself explaining epilepsy, dyspraxia, hemiplegic migraines, and gives further information about why he’s designed it.
The poster’s heading states ‘Not all conditions are visible. If you could see my pain maybe you’d understand’.
Since they’ve been created by Fixers, Tom has said that he’s happy with how the posters have turned out, and now wants to campaign with them in local schools to drive home the message.
This month has seen the inclusion of mainly positive news stories. People and companies mentioned have impressed me with the way they’ve exploited their efforts to improve epilepsy in different ways.
Right now, I only hope to keep an eye on the projects that are currently being developed, so I can take advantage when they come along to be beneficial to myself and others in the future. As well as that, the story of Alfie Dingley’s difficult life makes me want to play a part in getting cannabis oil treatment legalised in the UK.
The poster brought forward by Thomas Bell shows that he’s got similar interests to me too. He’s only 18, and I don’t want to push him into any career movement – but if I can give him a helping hand with his campaign, I wouldn’t turn it down.