Cystic fibrosis, Francesca: “I’ll tell you about the invisible disease”

“Whoever has health is master of the world and does not know it.” Francesca is 34 years old and was born with cystic fibrosis, a disease which, as she herself tells us, “is still little known” even though it is the most common serious genetic disease. A multi-organ disease, as explained by the Italian League of Cystic Fibrosis, which mainly affects the respiratory and digestive systems and is due to an altered gene, that is, mutated, called gene CFTR (Cystic Fibrosis Transmembrane Regulator), which determines the production of excessively dense mucus, capable of compromising the function of the organs.

In Italy, today there are almost six thousand children, adolescents and adults who are treated within the Specialized Centers. The campaign launched by the Italian Cystic Fibrosis League is aimed at them to support the “CASE LIFC” project, dedicated to the hospitality of patients and family members in the long period preceding and following the lung transplant, which is essential for those suffering from severe respiratory insufficiency. To support the campaign is enough a text message or landline call to 45598.

According to data from the Transplant Information System-SIT, over 300 people are on the waiting list for lung transplantation and there are seven Centers where they can be carried out in Italy, mainly in the North.

THE TESTIMONY OF FRANCESCA
“I always went to the psychologist, because growing up I went through hell, if you don’t live it to the full you can’t understand, I started not believing in myself anymore because of the bullies I had to face every day in elementary and middle school, that they didn’t want me at birthday parties, because my parents said I infected their children, but it was I who had to be careful, my mother explained to him in vain.

I could write a book of my childhood even though I was not understood and listened to .. Because little is known about Cystic Fibrosis, however, in this millennium there are little books, little pamphlets that explain, like a story, what this invisible and bastard disease is. When I was in kindergarten and middle school there was not the right information, there was nothing, not even the teacher who reminded you of the medicines, antibiotics to be taken at certain times, now instead, there is still a long way to go, but it was done by luck.

I was finally heard in the center of Ancona, the primary doctor Cipolli, spoke to my mother about the listing, because my spirometry values ​​were always weak up to 24. He sent me to Milan I accepted immediately, because my condition it got worse and worse, from oxygen to the ventilator. So on May 31st 2019 I entered the list. I found myself very well immediately. Just think that we have eleven physiotherapists at our disposal, and about twenty, including nurses and doctors / sse, in short, a large team, with two nutritionists and psychologists.

I seemed reborn after that hospitalization, until I got worse and ran to Milan again. After the first three visits they said to my bluntly “if you stay in Ancona, Francesca dies”, because they didn’t have a suitable machinery. They explained everything to us, so we moved to Novara, where the Italian Cystic Fibrosis League helped us a lot and is still helping us step by step. Then on September 8 my first pneumothorax, with saturation 86. Usually they intubate you with a similar saturation, in fact I rushed to the emergency room in Milan and barely saved.

On November 22, the new lungs finally arrived for me and mine alone, someone had given his greatest gift. My angel, who now lives inside me. They rushed me to thoracic surgery, from resuscitation. There was a moment when I felt alone, but then I said to myself “Francy, come out of here you can breathe, savor every second, no longer survive, be hung on a razor’s edge, between making it and not giving up”. I was about to do it, but then this angel who is now in me saved me ».