29 April 2024
My name is Romina, and I am Giorgio’s mother. Giorgio is a 15-and-a-half-year-old boy. At the age of 11 and a half, he had his first tonic-clonic seizure, something he had never experienced before. We later discovered from the neurologist that Giorgio had been making a slight eye movement since he was a child, rolling […]
5 April 2022
We are learning about Lafora Disease through the stories of girls like Martina and Carola who live with it every day. Unfortunately, there are also girls who have faced this disease, fought against it, and were only freed when their bodies (which were no longer truly theirs) decided to give up. Daniela‘s story began in […]
4 October 2019
There are only 200 people in the world like Carola, 16, from Fiumicino, and 30 in Italy. Two hundred children and adolescents are condemned because there is still no cure for Lafora disease, a genetic alteration that causes sugars to accumulate, especially in the brain, due to the absence of proteins involved in glycogen metabolism […]
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