5613274 “A PICTURE IS OFTEN WORTH MORE THAN MANY WORDS: STREET ART AS EMPOWERMENT FOR SICKLE CELL DISEASE PATIENTS” JACKELINE ELIZABETH MARAN1, MARINA PERDIBON1, ILARIA BAIDO1, MICHEL NKONGNE GYSLENE2,FABRIZIO CANONICI2, VANIA MUNARETTO3-4, GIULIA REGGIANI3-4, LAURA SAINATI4, ALESSANDRA BIFFI3-4, RAFFAELLA C

Abstract

Background: Sickle Cell Disease is a genetic and chronic disease which carries a great burden of recurrent symptoms, acute and chronic complications and stigma therefore greatly impacting quality of life and self-perception. Teenagers and young adults often do not want to talk about their disease or do not know how to communicate their experience to others. “Blood Artists”, was a multistakeholder campaign conducted in Italy (a collaboration between Universities, Hospitals, Pharmaceutical Companies, Patients’ Organizations) to raise awareness on Sickle Cell Disease and Thalassemia. Aims: Its main objective was to make people understand, through the direct language of street art, what it means to live Sickle Cell Disease or Thalassemia, two hereditary blood disorders that afflict thousands of people in Italy. The goal was to raise awareness among the public, especially young people, to make them understand how the disease impacts life and that some simple gestures, like blood donation, can help treatment. The street art initiative involved several italian cities including Padua. Methods: Several meeting with representatives of the Sickle Cell Disease Association (Associazione Malattia Drepanocitica) and the artis were organized to communicate the patients’ experience in living with SCD. Following the testimony of each patient, a draft of the painting was produced and then shared with the patients who commented and added their further contribution. Results: The Artist SteReal donated a wall painting- Street Art painting-, on the wall facing a very busy street of the Pediatric Hematology Oncology and Bone Marrow Transplant Unit of the Azienda-Hospital University of Padua, Veneto Region Reference Center for the Diagnosis, Care and Treatment of SCD in Childhood and ERN-EuroBloodNet Center of Expertiese. In the Street Art (Figure 1) the 3 individuals with SCD expressed what they thought were the most significant and common aspects of SCD: 1)The mural depicts the image of a mother and daughter playing together, and symbolizes’ the genetic transmission of the disease but also the importance of the family bonds in the patients’ lives and in disease coping; 2) the lightning which arrives suddenly and symbolizes the vaso-occlusive crisis pain symptom that disrupt everyday life; 3) the petals of the daisy that, flying in the wind take the Sickle shape of red blood cells, to represent the disease from a clinical and scientific point of view, but also the renaissance of life that can flourish in spite of the disease. Conclusions: In conclusion, the Street Art initiative represents an important means of making the public aware of people’s experience with their disease and the same time encourages patients to talk about it freely without being ashamed or afraid. The wall painting was used in several meeting with patients as a starting point for sharing experiences and discussion.Figure 1:: The Street Art created through the collaboration between the Artis SteReal and the Associazione Malattia Drepanocitica (Sickle Cell Disease Association), in Padova, Italy on the wall of the Pediatric Hematology Oncology and Bone Marrow Transplant Unit in March 2022.