Who we are

Ivan Giusi e Monica

Very simply, we are a ONLUS association with the aim to help the families in difficulty because of a rare illness known as Moyamoya.

We hope our help, together with the one of other people, can contribute to sensitize through a higher spirit of solidarity which seems not to be part of our times anymore.

The association called “Amici del MoyaMoya” is born from the experience  of Monica Rossi, a woman from the city of Bergamo affected by this rare disease.

MoyaMoya illness is a cerebral vasculopathy, of unknown cause, characterized by the constriction or bilateral occlusion of the bottom part of the internal carotid and by a thick net of new formed blood vessels of the base of the brain.

This reach vessels net appears through the angiography as a “smoke cloud” that translated in Japanese is Moyamoya. In Japan this cerebral pathology is more diffused than in other countries but in Italy it is so rare that it is not recognized by the current laws  neither it is foreseen that, who’s suffering of it, has a proper sanitary assistance.  It is often shown among children under 10 years and adults between the third and the fifth decade of life.

This disease can be asymptomatic for a long time and then  to come out with an ischemia or a cerebral hemorrhage and as a consequence it has a brain damage and motory and behavioral  diseases.

It is a progressive disease  and for that the brain injuries can relapse. The low cerebral flow may lead to a premature cognitive impairment.

 

The goals of the Association 

*To diffuse and deepen the knowledge of the illness in order to facilitate the remedies on the physical, cognitive and psychological problems of the sick persons                           

*To help the families and the patients to find the right structures that can give a specialized  sanitary support  

*To help financially who cannot cover the very high costs for the necessary rehabilitation after the illness degeneration (ictus, hemorrhages and so on….)