How is it to be still a teenager and receive a diagnosis of a rare disease affecting the optic nerve? Giving a name, after an obstacle course, to that vision that gradually gets worse: Leber’s Hereditary Optic Neuropathy (LHON). A condition that can overshadow one’s dreams, forcing to change jobs or, when younger, to completely rethink the future.
Nadine was still very young when, in 2011, the outlook on her future changed. Her condition affects central vision, which is needed for reading, for driving and for recognizing faces. We met her in Bottrop, in west central Germany, and she told us about herself, her passion for art, journalism and video games, the importance of her dog and how she felt when she received the diagnosis.
Nadine sees very little, but in her warm apartment, in a small town in the German countryside, her loving boyfriend and her very sweet little dog give her the serenity that I hope I have fully captured in this portrait.
INTERVIEWER
DISEASE
PP-G-1375 V1.0, Date of preparation: December 2023 | ALL_23_411