Atassia by Friedreich: a dance with the light balance to turn on the spotlight on the disease

Silvia works at the Bicocca University of Milan. Rita is in the third year of motor sciences at the University of Ferrara. Were involved together with Ukrainian artists Light Balance in an artistic performance (You resign yourself! I dance with friedreich … and light balance) which provides for a choreography of Music, dance and LED lights which make movements special.

What’s strange? There is that Silvia and Rita are in wheelchairbecause they suffer from Atassia by Friedreicha neurodegenerative rare genetic disease.

The initiative

In the video they feel choreography, they tell of themselves, what they do, both likes to travel, have an intense life. As Silvia points out, it takes patience, but the results are obtained. «This project (promoted by Biogen with the patronage of Aisa, an Italian Association of Ataxic Syndromes) contains a double message: on the one hand it wants to encourage patients and their families to maintain a positive attitudeof opening, to live life in the middle of one’s possibilities and daring without limiting themselves before even finding them in front of them, but on the other hand he wants to create awareness and support in front of a disabling disease, with a chronic and progressive course », intervenes Caterina Mariotti, Carlo Besta Neurological Institute of Milan.

« Friedreich’s ataxia arrives in an age that does not accept limits, but its progression hinders independence and the need for freedom. See the protagonists of the Ballare project together with the Light Balance Springs a lot of energy and is a positive metaphor, which helps us to see the experience of disease from another perspective, but at the same time makes us understand the difficulties and obstacles that patients and their families face every day ».

Symptoms and diagnosis

The initial symptoms of Friedreich’s Ataxia are awkwardness of movements, lack of balance and frequent stumbles. «They are not of a gravity that immediately creates doubts or concerns, for this reason often the diagnostic path begins with the pediatrician and orthopedist, and initially the diagnosis falls on more common pathologies such as the scoliosiswith the use of typical solutions such as physiotherapy, swimming, the back corset, « adds Dr. Mariotti.
“It is when a worsening of the picture In the face of these corrections, which begins to suspect the possibility of a neurological disease and, at this point, the neurologist predisposes exams that can lead to the diagnosis of ataxia by Friedreich ».

Definitive confirmation comes with the DNA testfor the search for alterations of the friaxin gene. In fact, studies have shown that at the base of the disease, there is the mutation of this gene. « To date there is no definitive cure»Concludes Dr. Mariotti. « The progression of the disease makes continuous adaptations of the ways in which daily activities are carried out and patients must learn to change the way of communicating, moving, using the body and word, to find new solutions to face life ».