Epilepsy is a prevailing neurological problem in which the brain activity becomes abnormal, often leading to seizures or unusual and abnormal behaviour. It is present across the globe, with yet undetermined causes. More than 1% of the world population is estimated to suffer from this disorder, which is not specific to race, ethnicity or geographical specifics. That makes more than 65 million globally. More to that, about 1 in 26 people will develop epilepsy at some point during their lifetime. Epilepsy can begin at any age and can seriously affect lives of people on multiple levels, from social relations to work-related activities.
The gold standard for diagnosing epilepsy is the usage of combined EEG (electroencephalography) and video data. Between 20 and 50% of people who undergo this diagnostic tool are found to have psychogenic seizures – visually indistinguishable and often falsely attributed to epilepsy. However, this technique is, due to its cost and availability of personnel and specialized medical institution framework, often not available for many in the need. Some studies show that annual per-person, epilepsy-specific costs ranged from one thousand to up to twenty thousand dollars. These costs tends to be higher for uncontrolled or treatment-refractory epilepsy.
Gap exists between employing medical equipment (costly and with long period of certification) and the oral interview that the neurologist uses to guide his judgement (that could be misleading). We discovered there is a lot of room for improvement – namely by providing assistive tools to help this judgement by the neurologist, that needn’t come all the way like the regular medical equipment.
We discovered that the technology this time came to the rescue (once again). Previously employed technique of using Android phones as a platform for recording EEG – and providing extreme “spatial” flexibility, can be extended by using the camera system on the same device.
Taken that the video and EEG are synchronized – which is ensured by mbt software – this becomes a very powerful and affordable “home laboratory”. This becomes even more important during a pandemic, when hospital visits are difficult and risky, and just leaving home can further endanger the health of those already suffering from epilepsy. Such a solution also highly increases the availability of EEG services, especially affecting patients in the low and medium income countries, and could contribute significantly to the fight against epilepsy on the global level.
A parent, family member or a care giver can mount the system and be in charge of recording video data “on demand” – once the unusual behaviour or a seizure is observed. This video data is precisely matched with EEG – and packed in the form easily accessible to doctors who can lead the further treatment. Even more, they could use the very same method to help assess the effects of treatment that is then adjusted.
What we describe is a still patent-pending technique, and, accordingly, still in the research domain. What we can say is that we believe there is a great future for similar technologies and we hope that these assistive tools will soon impact our lives in very positive ways. Taking video and EEG from laboratory to home environment opens up a great potential
s of continuous screening, which could lead to developing of the system which would be able to detect or predict seizures. This would be highly beneficial to any working man being at risk of epileptic seizures, especially in professions that require high levels of concentration, such as drivers or doctors. Finally this scenario could lead to diagnosing epilepsy at the earliest period. Once detected, epilepsy could be postponed, or maybe fully prevented.
Although the future of home treatment of epilepsy with the help of video and EEG looks great, we should not forget some other benefits that we are are left offered without every time we leave home. Actually, it is very hard not to see them. Staying at home, in the company of your loved ones and in the space that suits you best cannot be compared to visiting medical institutions. How about, instead of going to hospital and risking further – staying home with your family and friends, and having a physician on a Zoom call with your data in front of his eyes in close to real-time and getting high-quality diagnostics?
To get even closer to the possibilities provided by synchronized video recording and EEG at home, we will turn our attention to one current case. Its about little Leon, four years old child who is affected by rare genetic disorder. He is the youngest known among around six hundred cases worldwide. He has been diagnosed with the Syngap Syndrome.
There are many symptoms of the disease, including severe mental impairment, epilepsy, autism, severe sleep impairment, muscular hypertonia (limb muscles) resulting in motoric problems, impaired speech development, impaired digestion and eating, learning disabilities.
When Leon was six months old, the first dark clouds began to appear. Since then the biggest challenge was defining what the problem is. Still after the diagnosis, the everyday activates started to be very demanding. He needs daily care and training from home, and fortunately, by using an EEG and video to monitor the brain condition, Leon’s parents are able to always be on standby and monitor every boy’s change. As road changes are, and can be very ubiquitous, this kind of monitoring can be crucial in the struggle waged by the brave Leon and his dedicated parents. We are very pleased to see that the solutions we have been working on for years and which we have wholeheartedly donated offered to Leon and his family are making a significant contribution to this great battle.
Leon and his parents have long since become heroes, yet this situation requires modern techniques and methods of treatment that can be crucial in the fight against such a vicious disease. Their main goal is to find a cure for a currently incurable genetic disorder! This incredible dream is becoming more and more real day by day thanks to the great support received by Sandra, Florian, Leon and Marie in cooperation with AIT Vienna, University of Edinburgh and other institutions. If you would like to help this great cause visit https://leonandfriends.org/english/ for more information.