My sister Gioia and I have a really special relationship. I wanted to photograph her for two reasons: one is to go deeper in our emotional ties while the other one is to document from my point of view her rare connective tissue disorder. "Fragile" is a long term project and I'm using photos that I took since I started to photograph in my fourteens.
Since Gioia was young, she got wounded much more easily than other children did. When she was seven years old, she was diagnosed with Ehlers Danlos Syndrome. EDS is a rare connective tissue disorder, due to a defect in the synthesis of protein collagen. Involves mainly the skin, which is hyper-elastic, fragile, tending to break and it is difficult to heal. At the moment there is still no effective treatment or the possibility of a reliable diagnosis.
At the beginning of this project, I had to deal with a certainty: the “sick” person is not able to describe the pain experienced. The anthropologist David Le Breton writes: “the expressed pain, is never the pain you actually feel” and gives an example: “To know how much it hurts the fire, you have to burn yourself. But it remains the inability to know how great is the suffering of another who burns.” This is the reason why chronic pain produces new forms of expressive imagination, focusing on the metaphor, which helps to express the suffering to the rest of the world.
I connect those words to Gioia’s personality and creativity.
Work together with Gioia and take photos, allowed me to understand better how she relates to her body and the world around. It enabled me to understand better what she means when describes herself as "a woman of glass".
