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The organization changed the face of this disease in the country, taking it to be understood as a pathology and not as a “weird” disease.
The Fundación Distonía Venezuela celebrated its fifth anniversary on the World’s Dystonia Day with a scientific meeting on this medical disorder to give the people who live with this disease the change of receiving integral attention and to help on the search for a better lifestyle.
Asnardy Canquis, president of the foundation, highlighted the meeting as a total success. “Undoubtedly, in Venezuela, we can still bet for the win and that through teamwork, great things can be achieved. Our country is known for its working inhabitants, where medic sciences play an important role. This 1st Scientific Dystonia Meeting marked a start on Venezuela’s medical history, for being the first exchange of knowledge among specialist” – added.
This meeting gathered known specialists committed to the helping of patients with dystonia to exchange knowledge and advances on treatments for this condition on the field of neurology, physiatry, physiotherapy, occupational therapy, psychology, sexology and technology as tools for integral attention.
Also, it showed the human side of dystonia through the experiences of those who live with this pathology and have achieved great things despite the doctor’s diagnose.
This meeting had a participation of Rafael Nuñez Aponte, CEO of Fundasitio and specialist on cybersecurity and digital marketing, who talked about “The social essence behind the web, where Nuñez talked about the importance of the usage of the social networks and the digital environment to offer support and options to improve the patients’ lifestyle.
The first achievement on this 1st Scientific Dystonia Meeting was to change the face of this reality to the country, taking it from a “strange disease” or “rarely frequent” to a pathology that aims to get advances for people on suffer it.”
The meeting also achieved strengthening on its integral attention through its alliance with F.O.R.I Venezuela (a Venezuelan organization that offers splints, orthosis, and rehabilitation for patients), specialists on splints making and that offer their orthopedic solutions to patients with dystonia; and with the Centro Médico Odontológico La Esperanza, pioneers in Venezuela for giving medical attention to people under special medical conditions.
Also, they achieved:
“The technological enforcement with MásQueDigital as allies, through Fundasitio, with a new app to help people with dystonia”- Canquis added.
As well, Canquis added that every day, health professionals have joined forces with the foundation on different fields, such as physiotherapy, occupational therapy, psychology and dentistry as well as other complementary therapies.
Dystonia in Venezuela
Dystonia is a condition that limits movement and activates involuntary muscle movement, being repetitive movements and sometimes painful. It can affect only one muscle or a group of them and the symptoms could include shakiness, problems with the voice or even drag a foot.
Some people heritage these conditions, whilst some other develop it because of another sickness.
Those who suffer this sickness can count with the support of Fundación Dystonia Venezuela, created with the vision of helping people with this pathology that most face many difficulties to have the orientation and treatment most adequate.
“It’s important, at the moment of receiving a diagnose like this, to have a hand to hold, to receive support. Most people diagnosed with dystonia do not understand their condition, or what’s happening to their body, they’re on a process of self-acceptance and adaptation. They require tools that help them face the situation. That’s why we are here for, to give it to them” – assured Canquis.
Canquis recommends that people diagnosed with dystonia learn from other people under the same situation, that have already lived the same situation that they are living now:
“The psychological attention is also important and the approach of the diagnose through an interdisciplinary team” – highlighted-
The biggest achievement of this meeting compromises even more the organization with its job for the country and they have already started working on the first Integral Centre Specialized on Dystonia and many other movement disorders, a specialized space on clinical attention, of physical rehabilitation and investigation on this sickness.