You fall asleep during the day. Suddenly, maybe while talking about or at school. Sometimes you meet hallucinations and loss of muscle tonewith risk of falls. Excessive daytime sleepiness presents itself with pluriquidian sleep attacks, not procrastinable and sometimes not preparation. Short sonnellini They are also often restaurateurs and allow the subject an autonomy of 2-3 hours. The Total sleep in 24 hours It is generally within the norm: they are the continuous predisposition to sleepiness and disorders and the circumstances in which this occurs to be unusual. In fact, i narcoleptics They fall asleep in the least appropriate moments, for example during a conversation or while waiting for the bus.
AND The reality of those suffering from narcolepsy is very hard. But it is essential to recognize the picture, without wasting time. For this there are i Specialized centerslike precisely the center for the narcolepsy of Bologna. The specialists of the Center of Bologna, together with other Italian experts, are today members of the newborn APS Nait, an Italian narcolepsy group.
Beware of patients
“Type 1 narcolepsy is a disease that, in the individual affection, impacts on 24 hours, makes it very difficult to function and prevents the conduct of a healthy and productive life. Being of rare diseasefor patients research is fundamental “
explains Giuseppe Plazzi, neurologist, coordinator of the Center for Narcolepsy and sleep disorders of the IRCCS Institute of the Neurological Sciences of Bologna of the Bellaria Hospital and professor of childhood neuropsychiatry and adolescence of the University of Modena and Reggio Emilia.
The center of Bologna is an Italian excellence for this pathology, both for the number of patients and for scientific production: we are one of the centers that in the last ten years has contributed most in the research on narcolepsy both in children and adults.
“We work alongside the association Narcolectic and Hypersonni Association and we are part of the European Narcolepsy Network. We also deal with training in collaboration with various Italian University Masters on sleep medicine. One of the last ambitious objectives achieved is the realization of the first Italian study on telemedicine in narcolepsy, thanks to which we have been able to demonstrate the great potential that this mode of intervention could have both in the screening and follow-up phase, thanks to a network of specialists composed of neurologists, endocrinologists and psychologists. In synergy with the Higher Institute of Health we have drawn up the National National Register, to which the patient association also contributed. We have many studies on the psychosocial impact of the disease, learning and schooling “
Plazzi resumes.
Hopes for future care
On the New England Journal of Medicine the Results of the phase 2b study of Tak-861-2001 on patients with type 1 narcolepsy treated with Oveporexton, a molecule capable of acting on most of the symptoms.
“Overporexton He is a synthetic agonist of the 2 Elar receptor 2, therefore has the aim of replacing the deficiency of Orexin which causes this pathology. The data supporting the study of Phase 2b have shown clinically significant improvements on the whole spectrum of symptoms that affect patients, on the objective and subjective measures of the excessive daytime sleepiness (EDS), on the reduction of cattle episodes, on the severity of the disease and on the quality of life to all the dosages tested with respect to the placebo, during the eight weeks of treatment. The data have Improvements shown statistically significant in Primary and Secondary Endpoint: most of the trial participants have achieved normal values to the supervisory maintenance test (MWT) e improvements Clinically relevant in the wide range of symptoms studied. Finally, Oveporexton proved to be safe and well tolerated and the results of phase 3 in progress are expected before the end of 2025 “
Plazzi says.
“For people who coexist with type 1 narcolepsy, go to work or school and manage daily activities such as driving, exercising or socializing represents an arduous challenge. Phase 2b results suggest that restoring the hourly signal signal can help patients reach normal watter levels, such as those observed in healthy individuals, also positively influencing the large symptomatological spectrum of the disease “.
The experience of the Association
APS Nait was founded recently, Italian narcolepsy group.
“Through this network of reference centers that covers the entire national territory we want to offer an opportunity to improve clinical management and research on narcolepsy in Italy, also favoring the collaboration between the various specialized centers. We will deal with the scientific organization of conferences, events and webinars, the creation of a database for the collection of scientific data on patients affected by narcolexia and the organization of events with patient associations. form and that we are happy to promote “
The expert concludes.
“Type 1 narcolepsy impacts in an important way on the life of patients, both when it presents itself from young peoplewith weight gain, the typical ‘cataplet face’ and sleep disorders that are reflected in daytime attention, both when it manifests itself over the years, with cataplexia, sleep paralysis, hallucinations, night sleep disorders and daytime sleepiness, potential cause of driving accidents, domestic or work. For example, cataplexia is a truly disabling symptom: it presents itself with muscle sagging that can start from the face and then involve the upper and lower limbs and bring the person to collapse on the ground. The narcolenty is conscious of what is happening to him, but it cannot react because it is in complete atony. Even feeling emotions becomes problematic: laughter, excitement for a film, a welcome activity, good news or anger can cause episodes of cataplexia as a response, with consequent strong tiredness and further worsening of sleep. This new drug is a real revolution For patients, it is able to control almost all symptoms and has already allowed many people who participated in the trial to resume their lives. With the intake of this therapy it is possible to arrive in the evening without manifesting symptoms and without the clumsy side effect. Patients are all enthusiastic. Today the life of many of them can change “
Massimo Zenti, president of the Italian Narcoleptic Association and Hypersonni concludes.
