A lioness in a cage. The story of Giulia with cystic fibrosis

A lioness in a cage, called Giulia. So an unfair disease like cystic fibrosis made that girl feel full of life and eager to do it.

I have to feel free to run, do what I want, with whom I want, but I still can not write

A pbadionate love of the 35 year old Roman for colors giallorossi who has always supported since from childhood to years of illness: a pbadion that wrote those who knew her, helped her even in the most difficult moments. 19659005] Cystic fibrosis Hereditary genetic disease that affects a newborn on 2,500 2,700 and of which about 200 new cases are recorded per year, depends on a defect in the CFTR protein ( Cystic Fibrosis Transmembrane). Conductance regulator). As a direct consequence of its alteration, there is an anomaly in the transport of salts: sweat very rich in sodium and chlorine, thick and viscous mucus and tends to clog the ducts in which it is located. It affects the respiratory system, the respiratory tract, the intestine, the pancreas, the liver and the reproductive system.

To date, there is no definitive treatment, but available to the patient, there are drugs that can still counter the symptoms and also significantly improve the quality of life of patients. Therapeutic innovation, as explained in the recent conference on adult cystic fibrosis, has increased life expectancy so much that if patients were almost entirely children (in the 1950s, L & H) Rare Diseases Observatory rarely arrived at school), today there are many sick adults . And they study, they work, they have a life even if with difficulty

However, the disease has a significant impact on the duration and the quality of life. In fact, there are more than 1000 different known mutations of the gene that codes for the CFTR protein; different mutations correspond to phenotypes of different diseases, more or less serious

There are therefore serious patients for whom the only hope is the transplantation of the lungs or the liver, there are people who manifest the disease very late and light form and completely asymptomatic cases explain the experts O.MA.R.

Strong, but by force

I was fed up with being in the hospital, not having any more of my life, giving up everything I would like, I'm tired to be strong, when to be a strong constraint.

So Giulia went after her long battle with cystic fibrosis; during his last admission to the Policlinico Umberto I, where he was missing, between the affection of his relatives and friends who have always supported them during these long months of struggle.

We thank all the words and affection of our warrior! Special thanks to everyone who was close to Giulia during her long and difficult battle by giving her time and smiles! Responding to all the impossible and heartbreaking messages at the same time greeted her family, communicating it to the many friends of the young woman.

Photo: forzaroma.info