“Sorry for the inconvenience”. Fighting with disease and bureaucracy

The story of Orlando, a 77-year-old from Cosenza who lives in Tarsia forced to fight against a terrible rare neurodegenerative disease but also with the bureaucracy, where too often he forces to exchange rights for favors

.

TARSIA (CS) – The drama, which we tell you about first part in our Diary, is that of those who every day struggle with a rare disease like l’Huntington, a terrible hereditary and neurodegenerative disease that requires continuous assistance and treatment. And all too often to the drama of the disease is also added that of the bureaucracy and the chronic lack of funds. Sick people who in most cases should be protected and treated with mobile units that intervene directly at home. Sick people and families fight a terrible battle alone and ask only for dignity. This is the story of Orlando, but it is also the story of his family and his wife Maria Sofia who fight every day, simply asking for their rights to be respected, as his daughter wrote with an almost desperate cry for help “I would just like to restore some dignity to all sick people, who in addition to having already been penalized for their illnesses, have the misfortune of living in Calabria … where we are forced to constantly ask favors for our rights!”

FIRST PART

And we return to discuss the topic of aids intended for patients with severe disabilities and the application of law 96 in force since 2017. Standard which, to date, has not been applied in any region with suitable procedures for finding the aids prescribed to people with very serious disabilities, therefore forced to give them up or to buy them at their own expense . There is more: in Calabria the funds for very serious diseases have stopped in 2016.

What is the Huntington’s disease

A rare, inherited and neurodegenerative disease that primarily affects the nervous system. It causes degeneration of the neurons of the basal ganglia and the cerebral cortex and is characterized by pathological involuntary movements, severe behavioral alterations and a progressive cognitive deterioration. It is a disease that affects the adult population (there are rare juvenile forms) and the onset usually occurs between 30 and 50 years and the course is slowly progressive and fatal after 16-20 years of illness. In Italy it is estimated that of the 2 million people who suffer from a rare disease, about 7,000 are affected by Huntingto’s diseasenor are between 30,000 and 40,000 people at risk of getting sick.

–