the ordeal of the 600 thousand of which no one speaks- breaking latest news

A few months ago Simona, 30, from Piedmont wrote a letter all’International Bureau Epilepsy (Ibe) to tell his story: «I am epileptic since I was 12, I have been treated since 2012, in 2016 I graduated. I worked in a night rescue center, then I decided to participate in a selection competition as a station master. I was declared unsuitable by the medical board, subsequently a State Railways expert instead he put pen to paper that I was deemed suitable to perform that function. A few days ago I received the communication from the FS. Not hired due to inability to fill the post of station manager ». The denunciation of her is made public by Francesca Sofia, president of Ibe, the first woman and the first Italian to hold this position, speaker at the conference organized in the Senate to raise awareness among decision-makers and professionals: “It is an example of legitimate institutional stigma. In many countries the condition of people with epilepsy is much worse ».

Neurons

As Simona (who will appeal) testified in Italy the situation is unresolved. Here too it is a neglected disease because wrapped in the lack of knowledge. The Lice, the Italian League against epilepsy, is back to claim the right to visibility, not an association but the only Italian scientific society, to which 200 specialists refer (not only epileptics, also surgeons, pediatricians, neurologists, psychiatrists) and at least half of the patients sent for treatment (600 thousand in all). Oriano Mecarelli, past president of Licelists the erroneous prejudices, starting with non: “The disease is not a mental disorder, it is not a strange disease, it does not always express itself in the same way, it does not always begin in childhood, it is not always incurable”. And then let’s clarify.

It is a chronic disease caused by a population of neurons that become hyperexcitable causing seizures. It begins in the pediatric age and sometimes in the third and fourth age. There are benign forms that can disappear and then return, even if treated well, and severe forms whose management is more complex. We cannot speak of healing, al maximum remission because, even if they regress, it is not certain that the crises will one day not reappear. Where to get treated?

Only four regions they have dedicated paths, organized with multidisciplinary centers. The result is that there is an intense migration from one part of the peninsula to the other to find assistance and skills. The current president of Lice is Laura Tassi who focuses on other critical issues: “Surgery is underused because patients are afraid or arrive late when they can no longer operate, or because there are few centers. Diagnosis is for life, epilepsy is a chronic disease even when it is treated well. In various cases it is resolved leaving the patient free for at least 10 years, 5 of which without the support of treatment “. Sometimes resolution is spontaneous, in between 30 and 40 percent of people with epilepsy they are resistant to drugs therefore they continue to have crises, the only alternative is palliative care which does not mean ineffectiveness but which intervenes only on the symptoms. These are ketogenic diets, vagus nerve stimulation and others. Laura Tassi asks as Lice that these alternatives be “made available to those who cannot take advantage of traditional surgery”.

Therapies? There are dozens of them, of first, second, third and fourth generation, sometimes up to 4-5 are prescribed together. There is still a lot of fear and unpreparedness on the part of those who do not know. Teachers should be trained to intercept crises at school, pupils should be explained what happens to the “strange” classmate. A law has been under discussion in Parliament since 2018, now it is still in the Senate and, with the renewal of the government and the parliamentary structure, a new, long silence is expected. Among other things, the knot of the appropriate term with which to indicate benign forms is dissolved. We cannot speak of healing, but of remission or resolution. We dwell on the details, keeping families waiting for attention and understanding.

At any age

Epilepsy is the second neurological emergency after ischemic stroke. It affects one in 100 people, in low-developed countries the numbers are higher, there are 50 million patients in the world. The disease can arise at any age, with two peaks of incidence. In the first years of life and in old age, an increasingly frequent circumstance. With us every year there are 86 new cases in the first year of life, 20-30 in youth / adult age and 180 after 75 years of age. Genetic factors and malformative or tumor pathologies persist at the basis of the high incidence in childhood. For those over 75, the cause lies in concomitant increase in pathologies potentially epileptogeners related to this phase of life. Brain stroke, neurodegenerative diseases, tumors and head injuries. One third of epilepsy patients are not sensitive to drugs and represent the largest share of expenditure for the national health service and for caregivers.