At a young age, Ilaria Di Biagio learned her little sister was more fragile than other children. Injuries came easily, and her body was slow to heal. Her condition eluded doctors for years.
Gioia was finally diagnosed with Ehlers-Danlos Syndrome when she was 7. Her family was told the rare tissue disorder was to blame for her hyperelastic skin and flexible joints. There was no cure.
“It was kind of a release, knowing scientifically what she had,” Ilaria said. “But in daily life, nothing has changed.”
As a photojournalism student, Ilaria began documenting her sister’s condition late last year. Gioia, now 27, had the idea for the collaborative project ahead of her annual check-ups.
While Ilaria had gone with her sister to doctors visits a few times in the past, she was more involved this time around.
“I had never photographed her for her disease,” she said. “It was something much more intimate than anything we have ever done.”
Though little research has been done about its prevalence, the National Institutes of Health estimates that 1 in 5,000 people has some type of Ehlers-Danlos Syndrome. Patients often bruise easily, suffer from chronic pain, and have loose joints that are prone to dislocation.
When she was 12, Gioia’s mesenteric artery was blocked twice within six months. Doctors suspected she had vascular EDS, a rare form that affects roughly 1 in 250,000 people and can have life-threatening complications. New DNA tests may show she has a less severe type. They’re still awaiting the results.
Ilaria says taking on this project has allowed her to understand more about her sister’s condition and how she relates to her body and the outside world. She says it’s the most difficult work she has ever done.
“I am so happy to have done it – to have had the courage, which I had never had before, of seeing our reality,” she said. “Looking through my camera has brought me a step deeper, enabling me to see what she means when describes herself as ‘a woman of glass.’ ”
- Brett Roegiers, CNN