They called her “glass doll disease”. But its scientific name is Immune Thrombocytopenic Purpura, which is summarized with the acronym ITP from English. In summary, it is an autoimmune disease that involves a drastic reduction of platelets in the blood with consequent coagulation problems.
It mainly affects women and affects one to six people each year. Antibodies produced by mistake, an autoimmune disease, cause the spleen to destroy platelets. Result? The coagulation is altered and a minimal trauma may be enough to cause large hematomas. This is why we speak prosaically of “glass dolls” if people are affected by them.
The characteristics to know
We speak of Immune Thrombocytopenic Purpura when the platelets drop below 100,000 / cubic mm of blood (in the norm they oscillate instead from this value up to 400,000 / cubic mm).
The symptomatology however, it is not strictly correlated 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 / cubic mm: for this reason reason the diagnosis, although based on a simple laboratory test, is not always immediate.
Therapy relies on the use of 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 the loss of the same platelets and TPO receptor agonists ( Thrombopoietin) to stimulate its production by the body instead.
Only in extreme cases, which have consistently low values and severe symptoms, is splenectomy, or the removal of the spleen, necessary. Unfortunately, the picture can become chronic and therefore the disease becomes a life partner, to be followed with targeted treatments and to be supported also from the psychological point of view.
“In many cases it leaves clearly 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.
Also, since the amount of platelets fluctuates all the time, the patient lives with the sensation often described as fear of the storm: you fear its arrival, but you don’t 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.
Art in support of patients
In short, one wonders what is the face of this disease in the daily life of those who suffer from it? To depict 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.
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 pushed us to participate came from the words of 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 of the problem “. It is just one example of the work produced by young people.
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.