Here’s my overview of this month’s epilepsy-related news from around the world.
Ultra-Marathon Cyclist Katie Ford Breaks Cycling Records
Back on July 2nd, epileptic ultra-marathon cyclist Katie Ford broke two world records and two British records to gain some attention and help raise awareness of epilepsy.
The 31-year-old entered the Sir Chris Hoy Velodrome to try to break the 6, 8 and 12-hour indoor track cycling world records in Glasgow’s Emirates Arena. After covering a distance of around 190 miles, she’s managed to break the world records for 6 and 8-hours indoor track cycling, as well as the British records for 12-hour cycling and fastest 100-mile cycling on an indoor track.
Katie did all this for a good cause and is another person very keen to raise epilepsy awareness. By completing her 12-hour task, she has managed to raise more than £20,000 for both Edinburgh Children’s Hospital Charity and Epilepsy Action.
Katie was diagnosed with epilepsy at the age of 9 and found herself mainly having absence seizures, along with a few tonic-clonic episodes.
However, she was lucky enough to have brain surgery at the Edinburgh Children’s Hospital when she was 14 and cleared all of her seizures for around five years. Since then her seizures have recurred, but are still very well controlled by her medication; they only tend to take place about once-a-year.
Because of her occasional seizures, Katie chooses not to drive for the safety of herself and others and sticks to using her bike for transport. Because of this, she decided to try and break the indoor cycling records, something that hasn’t often been attempted by British cyclists.
To learn more about Katie’s challenge and make further donations online, go to epilepsyforward.com.
Bad Weather Brain Forecaster Developed in Melbourne
New technology to warn patients of up-coming epileptic seizures is due to be trialled on humans in 2018, now that a ‘Fit-Bit for the brain’ has been developed by researchers in Australia.
The device intends to record and decode the unique patterns of brain waves that take place a while before episodes take place. Afterwards, it would send a phone alert seizure forecast, which could well enable people with epilepsy to make lifestyle and treatment changes to increase their independence.
Much appreciation is due for around 100 neurologists, engineers, neurosurgeons and neuroscientists that might have created a useful tool across the globe for many people with epilepsy. Nevertheless, Professor Mark Cook said they do wish to keep their device only accessible to Australians to begin with so they can assist their country’s 250,000 sufferers more quickly.
Negotiations are now taking place with international manufacturers to produce a batch of the devices for the first human trials early next year, a process that is said to cost $3 million.
Positives to be Taken from Medical Cannabis Oil
In his previous years, Billy Caldwell was a young boy that had to deal with around 100 seizures ever day. But now? Billy Caldwell is now 250 days seizure-free after becoming the first person to receive a rare NHS prescription in the UK after taking a trip to see a doctor in the United States. The medicine he received was medical marijuana.
Billy is 11-years-old, lives in Northern Ireland, and suffers from status epilepsy, a severe form of the condition that leaves him unable to return from seizures by himself. He also has autism, a condition which is also said to have improved since he started his new medication.
Medical marijuana was first used on Billy when he was taken to a specialist epilepsy centre in Los Angeles, after finding a lesion in the left temporal lobe of his brain.
Like me and many epilepsy sufferers, doctors said an operation wasn’t possible, but he was instead transferred to an L.A. medical cannabis specialist. He went on to try medical marijuana for eight months while being supervised by a medical doctor.The medicine itself only contains a compound found in cannabis plants known as CBD. It took a little while to take effect, but when it did, Billy’s parent’s and family were incredibly happy with his progress.
As well as being seizure free, Billy has now sustained more balance and can walk up and down steps without assistance. His eye contact and concentration levels seem to have improved as well.
Since his improvements, the medicine is now named as Billy’s Bud after the youngster. Described as an “area of huge untapped potential”, British scientist’s wish to investigate the drug in much greater depth, and make it more accessible for patients in near future.
People Forgetting to Take their Meds
This month, results were revealed from a recent poll conducted by Epilepsy Research UK; 125 people were asked to estimate how many times they had forgotten to take their medication, or whether they had taken it a lot later than usual.
Taking you medication at a set time every day can be a helpful routine to control your seizures. However, over 20% said they had forgotten once in the last month and 25% said they had forgotten to take it twice or more in the last month.
To learn more about the poll take a look at the statistics gathered by Epilepsy Research UK. You can also gather some simple tips to help you to remember to take your medicine more often.
In my eyes, it’s been a pretty positive month for epilepsy. Fundraising, technology and medicine improvements have all led to acclaim, and even the poll could lead people with epilepsy into living a healthier lifestyle.
I was very happy to come across Katie Ford, a female fundraiser who is very much looking to raise epilepsy awareness. She even followed me on Twitter, and I hope she’ll be happy for me to interview her in the future.
The ‘Fit-Bit for the brain’ sounds very interesting to me. I believe it could be useful for a lot of people with epilepsy, and unlike the developers, hope the device is initially produced overseas so that it’s available sooner to other countries around the world.
And marijuana medicine? It doesn’t sound like a bad idea to me. It’s had such a positive effect on Billy and I believe it should soon be available for other sufferers.
Thanks for reading this. I’m hoping to keep the ball rolling, and have another decent overview available at the end of August.