“Fragile” is a long-term project started in 2011 by the desire to tell, through photography, the way in which my sister Gioia lives every day with her rare disease.
When Gioia was 7 years old, she was diagnosed with Ehlers Danlos Syndrome (EDS), which mainly affects connective tissue and is caused by a defect in the synthesis of the collagen protein. It mainly involves the skin, which is hyper-elastic, fragile and difficult to heal.
People living with EDS suffer from chronic pain of various kinds on a daily basis. When we were small, it was difficult to understand what we could or could not do. I was a tomboy, the complete opposite of Gioia who, instead, gave the impression of being very delicate and calm. After a couple of bad experiences while we were playing together, I learned to play with her without necessarily causing a rush to the hospital.
Despite the difficulties caused by Ehlers Danlos Syndrome, Gioia is an extremely positive and luminous person, who faces life with extraordinary strength. This is the aspect that we wanted to investigate: not so much the causes of her illness, but the way to deal with them, with the certainty that smiling can certainly support treatment.
The photographs included in the project were taken by the author from 1997 until today. Some belong to family albums.
“Fragile” is a project started in 2011 and still ongoing by Ilaria Di Biagio in collaboration with Gioia Di Biagio.