Immune Thrombocytopenic Purpura. Summarized in the most practical ITP acronym (from English Immune Thrombocytopenia), these three medical terms indicate an autoimmune disease that involves a drastic reduction in blood platelets with consequent clotting problems. But if the scientific tongue twister of the name is quickly explained, what is the face of this disease in the daily life of those who suffer from it? To portray him, expressing himself in different artistic forms, will be 13 students of the two-year specialization in Art Therapy of the Brera Academy of Fine Arts who have joined the initiative “The face of the ITP”, promoted by AIPIT Onlus (Italian Porpora Immune Association Thrombocytopenic) in partnership with Amgen, a global leader in pharmaceutical biotechnology.
According to the most recent epidemiological data, ITP counts every year in Italy from 1 to 6 cases per 100,000 inhabitants, mainly women. Disease of autoimmune origin, since it is the same antibodies that induce the spleen to destroy platelets, is characterized by ambiguous symptoms. “In many cases it leaves visible marks on the skin, because low platelet levels cause the appearance of petechiae and hematomas, spontaneous or as a result of the slightest bump, as well as spontaneous bleeding usually from the nose and gums, but also in the internal parts of the body“, explains Barbara Lovrencic, President of AIPIT Onlus. «In many other cases it is instead an invisible pathology, which however induces a sense of exhaustion and discomfort that negatively affects the person’s experience. Furthermore, since the amount of platelets fluctuates constantly, the patient lives with the feeling often described as fear of the storm: you fear its arrival, but you do not know when exactly it will occur. Sense of fragility, fear of the future, shame for one’s own image are all sensations well described by the patients that our Association has involved in a narrative medicine project to try to give a face to the Immune Thrombocytopenic Purpura. Exactly as the students of the Brera Academy will do now, with the hope that their works will also be food for thought for the doctors who work in the hematology departments where they will be exposed, to help them better understand the aspects of a non-serious disease like leukemia, but still with a major negative impact».
Patients’ testimonies have been a source of inspiration for young artists, as confirmed by Lisa and Sara, who after a friendship that blossomed in Dad worked together in Turin to combine their creativity: “The strength that prompted us to participate came from the words of the people living with ITP. We want to share their experience, make it a little bit ours too and, through art, try to give a new image to the disease, suggesting to all those who are confronted with it, that is, to patients but also to their families and friends, a new reading the problem“. While the image of the “glass doll” evoked by many women with ITP with respect to themselves and how they are perceived by others struck Caterina and Giulia, who decided to use this material to create their work: «Glass is very fragile, exactly as many patients say they feel. In their testimonies we have noticed that there is often a deep sense of shame caused by seeing the signs of the disease reflected in the mirror. For this reason our work will be based on the idea of looking for oneself through one’s frailties and finding oneself in a new mirror in order to move forward and face the disease.».
For the 13 young artists, participation in the initiative “The face of the ITP” is also an important step in the training path leading to the academic diploma in Art Therapy. “The skin is par excellence a place of personal identity, which is therefore put at risk by the particular symptoms of this disease. An aspect that greatly struck the students, together with the emotional fragility and shame, that art can win thanks to being “shameless” by definitionHe observes Daniela Zarro, professor of artistic anatomy at the Brera Academy. «These are themes that we constantly face in our two years, aimed at training artists who know how to combine creativity, artistic languages and knowledge of materials not only to send positive messages, but also and above all to help those in difficulty to find themselves developing an art form. In this sense, it should be emphasized how the Shared Work was born in Artistic Therapy, which is carried out by several hands (as in the case of 6 of the students involved in this project) and which in most cases is the result of an encounter with the others, with their suffering and their desire not to give up. Exactly what happened with the testimonies of patients suffering from Immune Thrombocytopenic Purpura: all the works of our students also bear their signature».
From a clinical point of view, we talk about Immune Thrombocytopenic Purpura when platelets drop below 100,000 / mm3 of blood (in the norm they oscillate instead from this value up to 400.000 / mm3). However, the symptoms are not strictly related to the concentration present and many subjects show the classic signs of ITP (petechiae, hematomas, bleeding from the nose and gums, internal bleeding) only when the platelets go below the critical threshold of 30,000 / mm3: for this reason the diagnosis, although based on a simple laboratory test, is not always immediate. Therapy is then based on the use of the following drugs: corticosteroids (derived from cortisone, usually prescribed for short periods) and immunosuppressants to block the activity of the immune system, preventing it from attacking platelets; immunoglobulins to slow down the loss of the same platelets and agonists of the TPO receptor (thrombopoietin) to instead stimulate their production by the body. Only in extreme cases, which have consistently low values and severe symptoms, is splenectomy, i.e. the removal of the spleen, necessary1.
Once onset, however, ITP becomes chronic in 8 out of 10 adults and therefore requires targeted care to maintain a sufficient number of platelets in the blood, as well as adequate psychological support.