Essential tremor, patients don’t know who to turn to

Essential tremor, patients don’t know who to turn to

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Essential tremor, a chronic and highly disabling neurological condition that affects approximately 400 thousand individuals in our country. Despite its widespread diffusion, this pathology, distinct from Parkinson’s, is still little known and those who suffer from it are still poorly protected in terms of health and information.
In recent days it has been widely discussed in Naples, during the conference “The right not to tremble”, organized by the Tremori ETS Association with the patronage of ALTEMS – High School of Economics and Management of Health Systems and MESIT – Social Medicine Foundation and technological innovation. A discussion to raise awareness of institutions, businesses and the public about this serious disorder.

Patients don’t know who to turn to

80% of ET patients are unaware of available treatment options. Most of those affected do not know how to deal with the situation and simply suffer it without asserting their patient rights.

Luca SavaresePresident of the ETS Tremors Association, opened the Neapolitan event at the Britannique hotel by explaining that “today, despite technological advances, access to treatments for those suffering from essential tremor is still very limited. Many people either do not seek treatment or they give up doing so due to the long waiting lists. The Campania Region has expressed on several occasions its desire to strengthen assistance for this pathology which represents the largest movement disorder. We are here with the clinicians, with the administrators , with experts and citizens to take stock of this path and also if possible to accelerate it to protect patients’ rights.”

Access to care

Doctor Ferdinand Russo, General Director of the “Luigi Vanvitelli” University Hospital added: “the times require careful reflection on these highly disabling pathologies, since access to treatment has great public value. In Campania there is an important gap to fill, also considering that from Naples on down there are no centers authorized to treat chronic neurological diseases. It is necessary to work on technologies and organizational processes. We must not allow differentiated autonomy to increase the gap between north and south and we must use the funds in the best possible way to give patients from Campania the opportunity to access the care to which everyone is entitled.”

The importance of a correct diagnosis

The professor Alessandro TessitoreProfessor of Neurology and Head of the Movement Disorders Unit at the University of Campania “Luigi Vanvitelli” explained: “The first step to guarantee greater and more democratic access to treatment is to increase awareness of this pathology among those who suffer from it .
Tremor is a symptom that can depend on numerous pathologies. Therefore, to address it with the appropriate therapies it is essential to make a correct diagnosis; remembering that compared to Parkinson’s, TE is the most widespread tremor but also the least known.
At the same time, we need to increase the number of surgeons qualified in Campania to administer the most advanced therapies which, when drugs are ineffective, can represent a valid cure. Often patients are not aware of the pathology they are suffering from and this assumption must be undermined to facilitate and increase access to treatment.”

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