Focusing on the lives of people with epilepsy

  Recently I read a news from Beijing Youth Daily: a driver friend concealed his epilepsy history to obtain a driver’s license and had a seizure during a driving trip, which led to the death of his wife. The driver regretted it and was dealt with by law for the crime of injury. As a long-time epilepsy researcher, there are some things I really can’t say when I read this story. Epilepsy, as a specific seizure disorder, has a tremendous impact on people’s lives, education, marriage, and fertility. According to the latest epidemiological data, it is estimated that there are about 8-9 million people with epilepsy in China, and about 400,000 new cases each year.  This figure should really attract the attention of the country. Compared to the progress made in epilepsy research and the importance of society in foreign developed countries, we are catching up in recent years, and there are already many people who are dedicated to the cause of epilepsy in China, including the recently established China Anti-Epilepsy Association, which has joined the International League Against Epilepsy and organized the Epilepsy Friends Association, one of the important purposes of which is to call on the whole society to care for and help epilepsy patients. Epilepsy, like other diseases, although its seizures are sometimes very frightening, should be helped by everyone rather than rejected or discriminated against. Given the possibility of uncontrollable behavior and impaired consciousness during a seizure, there are explicit state regulations that do not allow people with epilepsy to obtain a driver’s license.  This driver deliberately concealed his condition and caused a traffic accident as a result, posing a risk to his own life and the lives of others, and deserves to be held responsible. This case did not hold the hospital responsible for acting as a medical examiner. There is much to recall in the whole incident, and it also reflects the current social status of epilepsy patients without a clear institutional guarantee of rights and obligations. At present, in addition to the disorderly domestic epilepsy treatment market that is to be rectified, the popularization of epilepsy knowledge for epilepsy patients, their relatives and society is also a task that needs to be carried out immediately, and relevant legislation is also a necessary safeguard.  These efforts can be divided into several aspects to carry out: 1. In the face of epilepsy patients and relatives: because there are many types of seizures, clinical manifestations, treatment and prognosis are different, patients should at least understand the knowledge related to their seizures, including the method of medication, triggering factors, adverse reactions to drugs, timing of childbirth and work that should not be performed, such as driving, working at heights and other possible The family should encourage the patient to participate in as many seizure-related activities as possible. Family members should encourage patients to participate in as many social activities as possible and accompany and care for them when necessary to ensure healthy psychological development.  2. Facing the health system: The medical market should be regulated to ensure that epilepsy patients can receive timely and regular treatment; reduce the medical burden on patients (participate in medical insurance and social insurance).  3. Facing the society: the news media should cooperate with the health department, strengthen the public welfare, vigorously publicize the relevant general knowledge, regulations and research progress, and ensure the reliability of information; eliminate false advertising. The unit should arrange suitable types of work and reduce factors that trigger epilepsy such as staying up late.  4, the face of the judiciary: this is the most critical link. A civilized society is also a society with a well-developed legal system, and there should be laws to follow. People with epilepsy have the right to education, marriage and childbirth, and no one has the right to deprive them; they also have the right to participate in entertainment and transportation facilities such as airplanes; but at the same time, they have to do their duty according to their condition. Because epilepsy is not lifelong, different periods should have different requirements for patients; nor are all EEGs for epilepsy abnormal, and those with abnormal EEGs are not necessarily epileptic (epileptic discharges can occur in normal people), so adding an EEG to the medical exam when taking a driver’s license not only increases the cost, but still does not determine the diagnosis. The history of seizures is in many cases volunteered by the patient and the physician has no way of knowing; as with the medical examination for marriage, not all patients are tested for genetic aspects. Therefore, there should be a panel of experts to discuss and develop regulations to fully guarantee the rights of patients with epilepsy on the one hand, and to require patients to take the initiative to cooperate with their obligations to build a harmonious society.