Patients and Researchers, let's all seek! Interdependence as a way of healing

Suffering from a genetic orphan disease, juvenile hyaline fibromatosis, I have learnt over the years to know and understand my disease, its evolution, the care to be given to my body but also how much my physical limits are vectors of innovative forces. As an expert on my disease, I have been confronted with it for 13,500 days, visited dozens of hospitals in France and abroad, and met hundreds of doctors of all specialities. Operated and hospitalised repeatedly, the operating theatre and hospital corridors no longer hold any secrets for me. My illness made me discover the galaxies of science and medicine.

We are all researchers. You perfect your scientific knowledge of the disease, I try to tame its language. Illness becomes a vector of unique advances that we cannot hide. I seek, you seek with me, an exciting teamwork! The strength of an interdependence where each person puts his or her skills at the service of the other. I take this opportunity to meet you as a chance. Thank you for coming on this adventure with me!