Honestly, how time flies! Fast, fast, fast. We hardly have time to notice. For me, these 64 years of life, with all its circumstances, changes, adaptations, sufferings, joys, losses, adventures… have gone by like a blur. And I can’t tell you how fast a year goes by when I see myself back at the computer talking about November.
To this disease is added a disease that almost no other has, and that is the stigma that causes rejection in others. Because suffering a seizure or an absence is not only suffered by those who have this disease, but also by those who contemplate it, because it is not pleasant to see. And society has to be very aware, it has to know what this disease is, just as it knows what diabetes is and why people who have it have to prick themselves. There is a great need for education, explaining what this disease is, what to do in case of witnessing a seizure, that it is not contagious (there are still people who think so), that between 70 and 80% of people with epilepsy can lead a normal life, they can even drive. It is necessary to invest more in research so that the remaining percentage can have the best quality of life.
And society has to be very aware, it has to know what this disease is
Governments do not pay attention to this disease. We must get the government of Spain to collaborate with people who have epilepsy and pick up the requests of the Associations. In November 2017, the National Association of People with Epilepsy – ANPE, presented, through the parliamentary group Ciudadanos, a non-legislative proposal on the modification of the valuation elements of epilepsy for the assignment of disability, so that the consequences produced by this disease would also be taken into account and there would be a homogenization in all the centers of the specific assessment documents. It was approved. Has anything been done? Nothing has been done.
This same association also raised, in June 2021, a non-legislative proposal through the PSOE which was also approved and which must be locked in a drawer.
Therefore, each of us in our small area of influence: work, school, high school, university, family, friends, we have the obligation to be the true purple soldiers who fight against stigma, who explain what to do when faced with an epileptic seizure, who teach others who have just been diagnosed to live with the disease. For people with epilepsy, every month is an awareness month.
I am an activist for people with epilepsy and their families, will you join me?