Last November 15th, the Service of Medical Genetics that belongs to Unidade Local de Saúde Santa Maria, in Lisbon, Portugal, celebrated its 25th anniversary. The celebration included a lecture given by guest speaker Prof. Sofia Douzgou Houge and the vernissage of a photography exhibition.
This photography exhibition entitled “25 years, 25 faces – Rewriting the stripes” was curated by elements of Service of Medical Genetics (SGM), including the two representatives of ULS Santa Maria in ERN-ITHACA (Dr. Márcia Rodrigues and Dr. Raquel Gouveia Silva).
The title of the exhibition arises from the concept that rare diseases are “zebras”. In Medicine, we are taught to think first about horses (“when you hear hoof beats, think horses, not zebras”), but in Genetics we frequently deal with the rare conditions, the “zebras”. Each of the 25 photographs portrays a person with a genetic condition and aims to show that the “Person” is not defined by their genetic disorder and “rewrites their own stripes”, as a unique individual who is part of their family, community, school or work, celebrating individuality, equality and inclusion.The patients and families portrayed in the exhibition represent all the others that are part of the history of SGM.
This project emerged from an idea, which took shape thanks to true teamwork and the altruism of the very good people we met along the way, especially the photographer José Mata. We experienced moments of great communion with our patients and families during the photo shooting sessions. We shared life experiences, smiles, easy hugs and moments of complicity. It was a journey full of challenges and learning, which enriched us as people and which will forever stay with us. The exhibition was only possible thanks to the contribution of several people, who we acknowledge for their dedication to this project. We would like to also thank ERN-ITHACA for supporting this event. But our most special “thank you” is directed to the patients and families, who generously accepted our challenge and have taught us so much. They are the soul of this project!
