Let's meet the author of "That Disorder" project
Why a photographic exhibition on Huntington's disease?
Until a couple of years ago I had never heard of Huntington's disease. It presented itself in an overwhelming and unexpected way in my family with a first diagnosis to my mother who was already showing the symptoms. Afterwards I I decided to be tested and I found out to be positive. I met some families who are living the tragedy of this disease from several generations. So I felt the need to tell their stories, getting in touch with their innermost emotions.
What have you learned from the people you photographed so far?
Meeting these people has allowed me to better understand the disease.
Each story is different. Although there are some characteristics in common, the disease manifests itself in different ways and ages. Also the way of dealing with the disease or with the doubt of being gene carrier, differs a lot from one person to another.
I understood that there is a great need to not feel alone, to open themselves and share the emotions, often kept locked out due to the sense of shame or fear of social discrimination.
I have learned a lot about others and myself.
What is the main message you want to convey through your photos?
This project aims to show the human aspect of the disease. Each photo shows a face, each face tells a story with its own suffering, fears and hopes. I wish to convey many messages though the pictures.
The first message comes from those who literally and metaphorically have decided to put "their face" into the project: the desire to show and free themselves from that sense of uneasiness and stigma that often upsets them and their beloved.
The message I want to share with families affected by the disease is to not feel alone, to ask for help, to trust research that is taking enormous steps forward the goal of beating this ugly evil.
I want to share their stories so that they could reach an external audience and spread the message that Huntington's disease should be considered like any other disease. Often what's "different" frightens us, a fear mainly related to ignorance. This is why it is so important to promote knowledge and make clear that no one is "different".