Run Epilepsy! We are coming for you! – 1st Heuro Labs Survey results
Posted on February 10, 2016
Epilepsy is an ensemble of different neurological diseases and it is mainly characterized by seizures. It affects 1% of the world population, however its etiology and biological mechanism are not yet clear. For this reason, nowadays the therapies to treat it are not totally efficient and they still exhibit several side-effects.
Furthermore, finding the suitable treatment for each patient with epilepsy is often a long and puzzling process. It is based mainly on a ‘trial and error’ method; this approach puts the treatment of epilepsy before the patients’ well-being and welfare. During this process, the patients commonly experience numerous and severe side-effects that overburden their everyday life.
Therefore, Heuro Labs is running a research whose primary focus is the patients’ well-being while treating epilepsy. Its main goals are:
- helping physicians in the adoption of ad-personam therapies for epilepsy,
- shortening the ‘finding treatment’ process,
- limiting the side-effects of the various treatments.
The starting point of this research was having a deeper insight on patient’s experiences with epilepsy and with its treatment. For this purpose, a questionnaire was designed and promoted.
Questionnaire Design and Data Collection Process
The questionnaire shows three different sections. The first one aims to get a general profile of the patient (gender, age, ethnicity); the next section is asking more information on the patients’ experiences with epilepsy (onset age, epilepsy causes, types of seizures); whilst, the last one focuses on the treatment of epilepsy (AEDs patients are taking, their side effects and patients’ habits).
The questionnaire was promoted on social media (Facebook and Twitter) targeting various groups focusing on epilepsy. Furthermore, it was advertised on forums aimed to share patients’ experience with epilepsy. The answers to the questionnaire were analysed. We also collected patients input from specialized forums on Epilepsy.
- the most common seizures are tonic-clonic,
Tonic-clonic seizures, also called grand mal seizures, develop in two phases: the tonic phase is characterised by muscles tensing and loss of consciousness; while in the clonic phase, the muscles contract and relax rapidly leading to convulsions. These seizures start in one region of the brain but quickly spread to other regions, affecting the whole brain.
- women experience more frequently than men complex partial seizures,
- men experience more often than women myoclonic seizures,
Complex partial seizures involve only one cerebral hemisphere and lead to an alteration of conciousness; whilst myoclonic seizures are short lasting and consist in the rapid alternation of contraction and relaxation of muscles.
- the causes of epilepsy are still unknown for the majority of patients,
- Levetiracetam is the most popular AED,
- AEDs (e.g. Perampanel, Ethosuximide, Levetiracetam), onset numerous side effects,
Note: Side Effects are not reported for Piracetam, Retigabine, Stiripentol and Tiagabine mainly because these drugs are not widely used by the survey respondents.
- fatigue is the most common of the AEDs’ side-effects, followed by dizziness, insomnia, loss of memory and weight gain,
- several patients mentioned Ketogenic Diet as a nutritional approach that relieves the symptoms and the frequency of epileptic seizures,
- poor sleep was confirmed to worsen and trigger seizures.
According to the questionnaire’s results, in the next stages of the research, Heurolabs is focussing on Levetiracetam and on its effects on tonic-clonic seizures. We are also aiming to develop a series of guidelines that combine AEDs treatment with some dietary and daily-life guidelines. The objective of this approach is enhancing AEDs’ efficacy and relieving their side effects.
You are not alone
We believe that our core implication of technology should be that it makes lives better. Not only at the social network level, but also at the healthy mind and body level. Orphaned diseases, will no longer be orphaned when we and others have developed the technology that can make research into these conditions more affordable and the results more attainable.
If you or someone you care for or about have epilepsy, you can contribute to this fight in any of the following ways:
To further develop this project we developed a new questionnaire that’s focussing mainly on life-style (dietary and sleep habits). Please, fill it in if you believe in our project and would like to help us.
If you would like to be always updated on our research progress, you can sign up for our newsletter. It includes notifications on new studies, tips and more …
You are not alone. We built a tool that you can use on ‘your Android phone’ or on The Web, it is an audio tool where you can say anything you want about your condition, or how you feel or what you wish for. The stigma around epilepsy has to end, and it ends when more information is available, especially from the ones living with it. We look forward to hearing your voice.
Receive updates on our progress and future announcements. Sign up today for our newsletter