ROME (ITALPRESS) – Taking a cup of coffee between your fingers and bringing it closer to your mouth: a complicated gesture. Putting on makeup in the morning to go to work: an almost impossible action. Slipping the keys into the lock: an insurmountable difficulty. These acts of normal everyday life are a mountain to climb for people suffering from essential tremor, a condition that today was brought out of silence at the Shake Up Italy event, sponsored by the ETS Tremor Association in Rome at Borgo Santo Spirito. An event in which a video, produced by the Association, gave an emotional insight into what it means to live with this debilitating pathology. The event was also attended by Ilenia Malavasi (Honorable), Elena Murelli (Senator), Andrea Di Pilla (Health Planning Directorate, Ministry of Health), Ugo Trama (DG Drug and Device Policies, Campania Region), Giuseppe Quintavalle (DG ASL Roma1), Andrea Cicconetti (President Ferderfarma Roma), among others, as well as clinicians and representatives of patient associations.Essential tremor is the most common neurological cause of postural or action tremor, and is among the most common and widespread neurological disorders worldwide. ‘The diagnosis of tremor is mainly clinical and is based on the identification of characteristic symptoms, with patient history and neurological examination,’ said Patrizia Sucapane, neurologist, head of the Center for Cognitive Disorders and Dementia – Multidisciplinary Team in MRgFUS at San Salvatore Hospital in L’Aquila. ‘The treatment of tremor depends on the cause and type of tremor. The most commonly used drugs for essential tremor are beta-blockers, benzodiazepines and anticonvulsants, while disease-specific drugs are used for Parkinson’s tremor. In cases refractory to drug therapy, which are around 50 percent, the surgical option can be used. Surgical approaches are based on nonlesional (neuromodulation) or lesional (ablative) strategies. Deep Brain Stimulation (DBS) of the ventral intermediate (Vim) nucleus of the thalamus is a procedure that involves implantation, under stereotactic guidance, of electrodes into the aforementioned nucleus, connected to a battery that generates continuous stimulation of the Vim nucleus. Ablative procedures include unilateral thalamotomy by radiofrequency, stereotactic radiosurgery by Gamma Knife, and unilateral thalamotomy by focused ultrasound under Magnetic Resonance Imaging (MrgFUS) guidance.’ ‘In particular,’ concluded Sucapane, ‘MRgFUS has emerged as the most innovative ablative procedure for the treatment of tremor. It has the advantage over other conventional surgical options of not involving head incision: it does not require sedation of the patient and produces small, circumscribed lesions without damage to surrounding structures. The result is immediate and is seen during the same session: MrgFUS requires only one session and real-time clinical and radiological monitoring of the patient’s condition is possible ‘.On this diagnostic and therapeutic landscape has begun to move our Association,” emphasized its president Luca Savarese, “which was born in the face of an evidence: according to the literature, essential tremor is the most widespread neurological disorder in the world, affecting about one percent of the population. In Italy, according to some studies, the figure of people with essential tremor stands at 376,000. The absolute absence of a social representative entity to express and defend the interests of this portion of the disability made us move to initiate actions in the areas of Advocacy, Empowerment and Information.” And Tremors’ first public activity, presented today in Rome, was a Survey to which 560 people from the Lazio region subject to tremor responded. “Our survey had two objectives,” Savarese continues, “to give a voice to those who do not believe they are entitled to therapy, and to highlight what is the state of the quality of life of the tremor patient in comparison with the healthy; and to define what is the state of the perceived quality of life before and after access to advanced therapies. At the moment, within this regional sample, we were able to highlight that the quality of life of those who are able to access advanced therapies is very low, and this denotes a really worrying late approach to therapies.” The message is clear: there is a need to bring the disease to light, to develop virtuous action on the part of the NHS and its specialized centers, and to ensure that patients have early access to advanced therapies, which, thanks in part to MrgFUS, often present themselves as resolving.Widespread, debilitating, and yet passed over in silence: why does this disease still remain such a “phantom” condition? Responds Lorenzo Latella, regional secretary of Cittadinanzattiva Campania: “Tremor is one of those silent pathologies that lead patients to become accustomed to and forgo treatment pathways primarily because there is a lack of information about treatment. There are no, if not patchy, models of taking care and management of the pathology and, moreover, the dissemination of innovative technologies is also rather poor. As a result, the lack of information, the lack of dedicated pathways, the scarce diffusion of technologies and drugs capable of intervening on the pathology cause precisely a resignation on the part of patients who end up accepting their condition and giving up a different perspective and the possibility of a better life.” This is where the work that the Tremors Association has initiated and on which Cittadinanzattiva has been involved fits in, Latella emphasizes, “which aims to bring out the underground, structure pathways, improve access to treatment and return health and well-being to people. We are grateful to the Tremor Association and its president, who has given us the opportunity to put this pathology at the center of our action even to us initially almost unknown. “A fundamental reference for dealing with the pathology can be offered by clinicians, healthcare facilities on the ground and also the world of technological innovation. But how can advanced healthcare technologies support patients with essential tremor? Fernanda Gellona, of Confindustria Dispositivi Medici, answers, “The medical device sector is in the healthcare world the one with the highest and most constant rate of innovation; this means that, over time, many healthcare needs have been answered both on the diagnostic front and on the treatment and rehabilitation front. This means, to cite a few examples: laboratory diagnostics, as well as imaging allows, especially with the latest technological developments, increasingly earlier and more precise diagnoses; it means that surgery is less and less invasive and thus allows a faster recovery of the patient; it means that many cardiovascular pathologies are solvable thanks to medical devices. Even for essential tremor, medical technologies are now available that offer solutions to this need.” If anything, the real problem, which emerged during Shake Up Italy, is: but does the NHS guarantee access to these types of medical devices? “In fact, in many cases,” is Gellona’s consideration, “there needs to be a lot of push for administrations to understand what the benefit of a given technology is not only at the clinical level, but also at the care and social-health level. In other words, there is not yet the practice of evaluating a technology for its overall value, i.e.: whether in addition to clinical effectiveness the device brings a person back to active life or allows for less burdensome management for the care giver or saves money at the level of fewer hospitalizations. This attitude is all the more true the smaller the pool of patients who are potential beneficiaries of the technology. For these reasons, one can therefore certainly – unfortunately – speak of phantom pathologies to which, however, the world of advanced technological production tries to offer concrete, innovative and accessible answers.”
– photo press office Tremors ETS -(ITALPRESS).
