Reconheça que sou raro: um manual humanizado sobre a FOP

Abstract

The project aims to raise awareness of Fibrodysplasia Ossificans Progressiva (FOP), a rare health condition that affects approximately one in every million people. The condition causes muscle breakdown, resulting in the appearance of extra bones in the body's soft tissues. FOP leads to serious health complications and is little known among the general population. The research also seeks to humanize the experiences common to FOP sufferers, sharing experiences and creating a platform for discussion of methods that can be adopted with these patients. Thus, the journalistic product aims to highlight the stories of five individuals with the disease to make the discussion about the health condition more accessible. The project also includes chapters on technical issues involving rare diseases and the autonomy of human pain.