Work, relationships and healthcare: the three biggest obstacles facing epilepsy sufferers, according to a series of interviews with the presidents of the three leading epilepsy organizations in Italy, the United Kingdom and Spain.
Carried out for International Epilepsy Day by Elma Research on behalf of Angelini Pharma, the results of which will be presented on the 26th of March - Purple Day, a day dedicated to raising awareness among the general public of what living with epilepsy means.
The main problem, in adult age, for epilepsy sufferers which emerged in all three countries was work. People with epilepsy have a harder time finding employment, and declaring their condition or the fact that they are on medication often prevents them from accessing well-paid jobs or positions of responsibility. José Luis Domínguez, president of the Federación Española de Epilepsia (FEDE), explains that the situation is changing in large companies with inclusion programmes but not in most medium or small businesses, where employers may be worried about possible absences, or fear that customers and suppliers may be frightened in the event of a seizure. This can lead to sufferers keeping their condition secret and living in fear due to the risk of seizures, the absence of protection and a continuous state of anxiety in the workplace.
In Italy and Spain, another issue is the lack of comprehensive legislation to support and protect those with epilepsy and provide them with access to full benefits inclusion for a full citizenship.
Relationships can also be a challenge. The chair of the UK's Epilepsy Action, Richard Chapman, points out that relationships mean putting oneself on the line and exposing oneself to the possibility of rejection, which can be painful. Chapman says that progress has been made in the UK as regards educating the general public about the condition and that things are slowly improving with regards to epilepsy awareness, meaning people with epilepsy are isolating themselves and concealing their condition less, while increasingly speaking up about the disease and dispelling false myths.
Social isolation and self-exclusion remain an issue in Spain and Italy, however, a situation which Giovanni Battista Pesce, president of the Associazione Italiana Contro l’Epilessia (Italian Association against Epilepsy) believes can only be resolved by ad hoc regulatory interventions specifically targeted at supporting sufferers.
One critical issue in the United Kingdom concerns quality of care. Due to a shortage of the neurologists and specialized nurses who play a vital role in informing and supporting people with epilepsy, the rate of misdiagnosis in the country is extremely high - around 20 to 30% - meaning that there are about 100,000 people without a correct diagnosis who are therefore receiving inappropriate therapy. “People need to be seen by a specialist,” Chapman explains. “Everybody with epilepsy should be getting an annual review (and) have the opportunity to have an ongoing relationship with a well trained epilepsy specialist nurse.”
Uncontrolled epilepsy is also an issue. Though most people with epilepsy have total or good control of their seizures, some may suffer many seizures per day. Sufferers with this kind of uncontrolled epilepsy make up around 30-40% of the total, and the percentage has remained constant in recent years despite the increase in the number of drugs available. For this reason, there is a great deal of interest in pharmaceutical research, with the AICE in particular considering a direct commitment to raising funds to invest in preliminary studies for drugs capable not only of controlling the disease but of curing it. Other technological innovations which offer the hope of improved quality of life include a device mentioned by José Luis Domínguez which can recognize the warning signs of a seizure and alert both the persons involved and their family members and the sensor-equipped bed Richard Chapman describes which can recognise oncoming seizures.
In summary, what all three organizations are asking for is protection, inclusiveness, recognition of disability and laws and concrete steps to enable people with epilepsy to live a quality life by acknowledging and meeting their needs.