EPIDERMOLYSIS BULLOSA, THE ILLNESS THAT DOES NOT ALLOW TO THE BUTTERFLY CHILDREN TO SPREAD THEIR WINGS AND FLY
The Epidermolysis Bullosa (EB) makes the skin of the affected as delicate as the wings of a Butterfly, this disease manifests itself with lacerations and blisters that appear with great ease on every part of the body to the point that even a caress or a simple embrace can create great suffering to the people affected by this disabling syndrome.
During the evening, I had the opportunity to know Cinzia Pilo, a woman, a mother and a great warrior, as well as a president Debra italia onlus and an active part of the executive committee of Debra international, all associations that fund specific research projects on Butterfly Children Syndrome.
Among Cinzia's many projects, in support of the cause, there is also the birth of a Scientific Committee of Experts from EB, based on the register of patients of this syndrome and which will be dedicated only to scientific research to care for disease.
Cinzia fights her personal battle against Epidermolysis Bullosa for years since this degenerative disease hits her closely, unfortunately one of her two wonderful children is suffering for the syndrome and her story is made of exhausting cures, bandages, clashes with ignorance of people and it has profoundly touched me.
With her humanity, she has made me realize how lucky we are, indeed, fortunate and how many times we take it for granted the simple things like physical contact with people we love.