Friedreich’s Ataxia, Litani (Aisa): “Difficult to reach a diagnosis”

“We deal with all ataxias. The primary difficulty encountered is the diagnosis: in fact, it is often still difficult to understand what disease the child or young person is suffering from”. So Mary Litaninational president of Aisa (Italian Association for the fight against ataxic syndromes), in view of the World Ataxia Day is celebrated on September 25thduring a meeting on theFriedreich’s Ataxia (AF) organized by Biogen today in Milan. “The association – he explains – was born from the will of the parents of children affected by ataxia, because it is a devastating pathology not only for the child, but for the whole family. The isolation of the child, or the boy, and of the family is one of the main problems that emerge, which the association tries to remedy”.

Particularly important, in this sense, is the reintegration into school of children who had given up school due to logistical difficulties or difficulties in managing the disease. “The child with Friedreich’s ataxia – Litani specifies – does not need a support teacher who reduces the difficulty of the concepts, but help in taking notes or reaching the books, because” the disease causes “a motor difficulty. Children with ataxia must be able to continue going to school, and even go to university if they wish, adequately supported, because their intellectual abilities must be put to good use”.

Physiotherapy is a daily necessity for people with AF, but unfortunately “not all the local health authorities offer continuous physiotherapy – reports the president of Aisa – Children with ataxia have a daily need to do specific motor activities to be able to slow down the evolution of the disease, encouraging coordination and keeping the muscles active”.