Epilepsy: talking about it at work is still a taboo

If they were diagnosed, 42% of respondents would be afraid to lose their job, and 34% would not tell their colleagues about it.

• Survey conducted by SWG on behalf of Angelini Pharma: 4,000 respondents in five major European Countries (Italy, Spain, France, Germany, UK) on the perception of epilepsy, on the occasion of Purple Day, the international epilepsy awareness day;
• According to the majority of respondents, people with epilepsy – one of the most common neurological diseases, with 6 million cases in Europe[1] and 500,000 in Italy alone[2] – are perfectly normal people, but 40% would not talk about the disease at work;
• Those who know people with epilepsy, in fact, are aware that they can lead a normal life, but have also a direct experience of the prejudices that they must face.

Rome, March 26, 2021 – Four thousand European citizens were interviewed by SWG on behalf of Angelini Pharma on the occasion of the Purple Day, the international day of awareness about epilepsy. What emerges is a picture that is only apparently reassuring: most of the respondents in the five Countries involved in the survey believe that people with epilepsy are entirely normal, especially if they regularly take their drugs. Even from a work point of view, more than half of respondents believe that people with epilepsy can do any job. However, when asked “If you had epilepsy, would you talk about it with your colleagues or would you be afraid of losing your job?”, over 40% of respondents in all Countries stated that they would be afraid of being fired, and over 30% would not share any information about their illness with colleagues.

The workplace seems to be where people with epilepsy can find a less inclusive environment and be more at risk of discrimination. In this regard, Giovanni Battista Pesce – President of AICE (Associazione Italiana Contro l’Epilessia, “Italian Association Against Epilepsy”) – explained that this is not just a perception, and that people with this condition do find themselves facing considerable difficulties in terms of employment: “In general, one of the problems in Italy is precisely that of the barriers encountered by people with epilepsy who have to state that they are taking drugs: very often this aspect – which allows them to live a normal life – excludes them from job opportunities. Furthermore, the very fact of declaring the condition, as well as the possibility that sporadic seizures may occur, can be the cause of exclusion from job opportunities, even if a possible crisis has no impact on the task to be performed”.

People with epilepsy: they are like everyone else

When asked whether those living with epilepsy can be considered “completely normal” persons – or completely normal if the disease is controlled with drugs – 82% of the sample answered in the affirmative: a response similar to that of 3 out of 4 respondents in the surveyed Countries. The data seems confirmed even when respondents are asked what, in their opinion, people with epilepsy can do: 80% of those who know them personally report that “they can lead a normal life in most cases”. However, the perception seems to change based on whether they know people with epilepsy or not: in Germany, only 51% of those who do not know people with epilepsy think that they can live a normal life. Another important point is that of work: on average, 63% of respondents believe that people with epilepsy can carry out most of the jobs (with the exception of Germany, where the sample is below 50%).

Possible discrimination

When asked whether people with epilepsy may suffer from forms of discrimination, an average of 57% of the sample answered affirmatively. Many are the fears that arise when faced with the possibility of being diagnosed with epilepsy, and not only at the workplace. The same reaction has been found to occur, albeit to a lesser extent, to the question "If you had epilepsy, would you be afraid to reveal it?".  Thirty percent of the respondents would be afraid to announce their disease to colleagues, 26% to a friend, 18% to a family member. While in Italy the fear of communicating one’s disease is higher among those who have no direct acquaintances suffering from epilepsy, in other Countries the exact opposite occurs.

Direct knowledge of people with epilepsy affects judgments

But to what extent do the respondents know epilepsy? The vast majority of the sample say they have heard of it (99%), although only a few say they know it well (57% state they know the disease “fairly well”, 13% “very well”). The main source of information on the disease is through the direct knowledge of people with epilepsy, on average 38% of respondents from the five Countries. This allows to have a more positive perception of those who do not have direct knowledge. For example, the term “disability” is less frequently associated with the disease among those who know directly people who suffer from it than among those who do not have direct knowledge: 17% vs 26%; Spain is the only Country against the current, with 17% among those who know people with epilepsy versus 14% among those who do not know any. The average of respondents from the five Countries is 26% among those who know people with epilepsy versus 30% among those who do not know any. However, direct knowledge of epilepsy makes it possible to evaluate more realistically the difficulties that people with the condition have to face: the term “prejudice” is more frequently associated with the disease by those who know a person with epilepsy, 28% versus 18%, with the average of respondents from the five Countries standing at 18% versus 15%, a sign that those who know people affected also know the social implications that continue to exist.

Knowledge of epilepsy is still superficial

On average, almost a fifth of the sample (in Italy 15%) believe that epilepsy is a transmissible disease, or does not know whether it is transmissible or not. Furthermore, with the very significant exception of Germany, the vast majority of respondents (89%) consider seizures as the main symptom of epilepsy, while they are only one of the possible manifestations of the condition. Sixty percent of German respondents, on the other hand, indicate loss of consciousness in the first place. Finally, how many would know how to intervene in the event of a seizure? With the exception of the UK (51%), less than half of the respondents would: 29% in Italy. Even lower is the value among those unfamiliar with people with epilepsy, with an average of 22% of respondents from the five Countries. In any case, over 70% of the population interviewed shows a strong interest in gaining more information on epilepsy (65%) and its consequences on the daily life of those affected (67%), and would like to know more about how to help in case of seizures (75%).

“Research shows that, actually, epilepsy is much talked about, but not enough is known about it yet. It is essential to raise awareness among the population, to make the disease better known and, above all, to foster the inclusion of the people affected by it”, commented Agnese Cattaneo, Chief Medical Officer at Angelini Pharma. “Epilepsy, in fact, entails several neurobiological, cognitive and psychosocial consequences. In many parts of the world, the disease is still stigmatized. One third of people with epilepsy remain refractory to medical treatments, and the development of new therapeutic options is therefore necessary. Angelini Pharma wants to do its part, facilitating the best conditions for the people who suffer from epilepsy in our society, also with a new drug for the treatment of partial-onset seizures in adult: another step towards a normal life for all people with epilepsy”.

[1] World Health Organization. Neurological disorders: public health challenges. WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland, 2006.

[2] Ibidem.