Rare and 'invisible', 800 people suffer from short bowels

There are about 800 people, of whom 150 are children, who, in Italy, suffer from benign chronic intestinal insufficiency, a rare disease not yet recognized, and who risk, like many other chronic patients, to see themselves feeling even more forgotten during the year of the pandemic.

Tomorrow, the 11th annual conference of the Un Filo per la Vita Onlus association will take stock of assistance still patchy and on the daily difficulties encountered by these families.

Benign chronic intestinal failure (IICB) is caused by the persistent reduction of intestinal function below the minimum necessary for the absorption of macronutrients, whose survival is guaranteed by the life-saving therapy of artificial (parenteral) nutrition.

It is a rare and chronic disease, already included in the European list of rare diseases but as regards Italy it has not yet been included in the national list of rare diseases or in that of chronic diseases: this makes it unknown to many operators of the Service. National health.

The ECM conference, entitled "Taking charge and transition from pediatric to adulthood of the patient with IICB" is organized in collaboration with the Federico II University Hospital of Naples, with the patronage of the Campania Region, of the Scientific Societies.

"In this critical and extremely delicate period due to the current health emergency, our conference aims to be a beacon for all our patients, associates and families who feel isolated in terms of assistance as they are now strongly focused on Covid- 19 ", explains Sergio Felicioni, president of Un Filo per la Vita Onlus.

Also this edition, which will see the participation of the entire community and network of the non-profit organization, has been structured to address not only health professionals but also families and all people, directly or indirectly, involved in the management of the disease.