A(r)marsi (Self-love/Self-arming)

Valentina Achilli

CATEGORY Living with the illness

I created this work in an attempt to study and tell the story of someone who has experienced ITP first-hand, using material and gestures with a strong emotional component in the place of words.

It is a composition measuring approx. 72×55 cm, made up of twenty collages in which different types of paper alternate, form layers and converse, illustrating a multitude of inner landscapes. All the elements are handstitched together with thread and displayed against the light.

There are two main common themes among the various levels of interpretation. The first themes to emerge are those of fragility, vulnerability and delicacy (concerning the person’s mental and physical sphere in its entirety) that often accompany illness. The intention is not to consider “fragility” as something negative, but to offer a different perspective instead, reframing it as an aspect that incorporates its own intrinsic beauty; considering particularities and “rarities” as things that make us unique and special. This is why I have constructed a “skin”, both metaphorical and otherwise, through whose wounds and thinnest points – the places where it is most vulnerable – light is able to penetrate. The second theme is that of “armour”: the garment used in antiquity to protect the warrior’s body during combat, made up of numerous small metal “plates”. The multitude, the ensemble of elements that comprise the work in fact refers to that which is able to give strength; it illustrates how lots of individuals together can find strength, protection and support thanks to a collectivity in which they recognise themselves.

A(r)marsi means embracing fragility and finding strength, together.

Aquilone Combattente (Fighter Kite)

Sara Che Farina & Lisa Fontana

CATEGORY Living with the illness

In China, the kite represents the hope that all misfortunes will fly far away, and in India the name “Patang” is used to identify the fighter kite, a square-shaped kite still used today in the “Makar Sankranti” festival. In our culture, the kite is a timeless game. It is bought for children, but adults are always the ones who end up flying it, unconsciously or perhaps not. Here in the West we also recognise its great power: a link between humans and the sky, as they are able to rise up and fly despite remaining anchored to the ground with a string. To all this we added our energy, making the entire “skin” of the Aquilone Combattente ourselves. We started with a long unbroken thread of hemp, a primordial material, which we dyed with natural turmeric.

Lastly, inspired by the ancient Ikat technique of the Indonesian Iban people, we wove it on a hand loom. These fabrics are called “woven dreams”: indeed, if a soul strays too far or is lost during a dream, this causes illness because the body is deprived of its spiritual essence. Thanks to these fabrics, the soul always finds its body again. These stains are a reference to ITP, one of the first signs of its presence, but in Aquilone Combattente they have a different meaning: they provide strength and protection. The colourful threads of bamboo have been woven directly with the hands. Eastern peoples also see this plant as representing the ability to overcome obstacles, which bind the Aquilone Combattente to a pile of test results and blank sheets: these are all the emotions one feels when the results of the tests are normal and when they are not. The Aquilone Combattente is tied to its stack of sheets because not everyone affected by the disease can declare the game to be won, instead all too often it is a game that is left open. This artwork is for all those who encounter ITP in their lives, for those who cut that thread and for those who experience that tie with dignity and strength.

Material: hemp, bamboo, wood and paper

Dimensions: 200 cm x 60 cm

Technique: Natural dyeing, weaving on hand loom with four heddles, hand sewing, finger weaving.

Viaggiatori (Travellers)

Janiki Citti e Chiara Di Fant

CATEGORY Moment of diagnosis / Living with the illness

Starting from the testimonies of people with immune thrombocytopenic purpura and their personal journeys, we created three pages of an imaginary photo album.
It contains a collection of moments from their journeys that led them from diagnosis to acceptance and living with the illness.
When creating the work, we decided to use three different languages – photographic, poetic and material – in order to encapsulate words, imagery, stories and personal experiences and unite them in a single symbolic narrative.

“The journey is never over. Only travellers come to an end. But even then they can prolong their voyage in their memories, in recollections, in stories. When the traveller sat in the sand and declared: ‘There’s nothing more to see,’ he knew it wasn’t true. The end of one journey is simply the start of another. […] You have to go back to the footsteps already taken, to go over them again or add fresh ones alongside them. You have to start the journey anew. Always. The traveller sets out once more.”

José Saramago

Vetrografia (Glass-etching)

Caterina Simeoni
e Giulia Carolina De Cesare

CATEGORY Living with the illness

Vetrografia was inspired by the need to tell the story and illustrate what it’s like living with immune thrombocytopenia purpura.
The work is not complete without the viewer’s presence. Indeed, the viewer is reflected in the mosaic of broken glass and is thus able to observe the fragility of those with ITP.

A fragmented face, a distorted self-image, transformed by drugs and the obvious signs of skin disease, represented through the use of coloured glass.

The mosaic is held together and gives itself strength through its cracks, just like those who live with this autoimmune disorder.

Being ashamed of one’s appearance is a feeling often described in the testimonies of the sufferers and this is what inspired our artwork, a mirror, a place of confrontation and clashes.

The artwork is like a map in which one can lose oneself, recognise oneself and, perhaps, accept oneself.

Fragments of coloured glass and mirrors, 51 cm.

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Appassire per rifiorire (Wilting to flower again)

Anna Groaz

CATEGORY Diagnosis journey

Diagnosis journey of Immune Thrombocytopenic Purpura.
The artwork Appassire per rifiorire (Wilting to flower again) stems from the desire to translate the diagnosis journey through images: a difficult and painful journey, punctuated by moments of fear and discouragement, treatment attempts and adverse effects.
Through a short and silent stop-motion video, the artwork represents the cyclical nature of the disorder with moments of relapse and despondency alternating with periods of regeneration and wellbeing. In an attempt to represent the darkness and pain of the disease, but also the strength and resilience of those who live with it and bear the signs of it on their skin, the artist used the metaphor of the plant to represent the patient’s lives, the disease and its cyclical nature: the plant that grows, flowers and wilts with the first signs of the illness.
Flowering represents wellbeing and improvements as the platelets increase, while the wilting of the plant shows the moment when the disease is first encountered, presents itself and occurs again.

The artwork describes three fundamental moments in order to illustrate the disease:

  • The onset of symptoms: dark shadows painting those bruises and petechiae that make their appearance, marking the start of a long and troubled period of medical investigation and treatment;
  • The dark moment of unrecognised illness as an absence of colour and light;
  • Improvement and progress, in the form of an increase in platelets and the disappearance of bruising, represented by flowering and the bright red colour.

Appassire per rifiorire incorporates a desire to give a face to the disease through the art of colour and images, so that it can be better understood and known, bringing support to those who live with it and those who will live with it in the future.

Garze (Gauzes)

Beatrice Lo Presti

CATEGORY Diagnosis journey

The diagnosis journey of an autoimmune disease is often long, complex and exhausting. People who experience it find themselves in an uncertain dimension, in which fears make their way into their soul fuelled by the fact that they do not know what is happening to them.

They feel that something is wrong, but they cannot put a name and a face to what is happening, so they stop at the symptoms that pervade their body.

In Immune Thrombocytopenic Purpura, one of the first manifestations of the disease is the appearance of petechiae and bruising on the patient’s skin. The skin becomes discoloured and shows its difficulty in containing due to the insufficient number of platelets.

For my artwork, I chose to focus on the skin and its ability to be a protective envelope, but also a thin, fragile and vulnerable layer.

Gauzes are an evocative material. Commonly associated with wounds, they have a structure and texture reminiscent of the skin, as well as a vulnerability and fragility that metaphorically binds it to the latter.

In addition to the physical aspect related to haematomas visible through the layers of skin, I imagine the diagnosis journey to be just like a wound that tears at the soul of those who have had to face it.

It is a wound that they will carry inside themselves every day of their live and that they will only be able to come to terms with in time, while always fearing a relapse.

Fenditura (Slit)

Adele Marino

CATEGORY Diagnosis journey

My work speaks of a body that slowly, due to various diseases that develop over time, is invaded and trapped by pains, doubts and fatigue until a diagnosis is finally made and there is once again some hope in life.

I think one of the worst fears you can experience is the feeling of being lost, that no one can fully understand you.

My artwork wants to talk about all this, but also about hope, light and rebirth.

Hence the idea of using both recycled and organic materials, such as dried flowers and plants, materials such as unfired clay which is therefore subject to change and rebirth if handled with care and love through the use of water and one’s own hands.

I believe that there can be no more suitable material to represent a process such as this.

And so my artwork takes shape and space, breaking the barriers of the cage that contains it. Life invades it, so that it is no longer a place of constriction and enclosure but a kind of safe space, a place in which all hope can be placed.

Terapia (Treatment)

Michela Meloni

CATEGORY Treatment

It all starts with a yellow spiral painted in acrylic on a 70×100 canvas. The spiral is the symbol of rebirth, of care, it is the representation of the movement of energy. The care needed for immune thrombocytopenia purpura, during which special individual attention is required.

First-line treatments are currently based on the administration of corticosteroids or intravenous immunoglobulins.

In this work, I wanted to highlight the steps that proper treatment should take through the alternating colours and shapes of the platelets.

Starting from the pictorial work, I used digital technology to develop the changes that occur with effective treatment.

Digital artwork Format 50×50
Video artwork duration 02 min 24 sec

Play Video about Michela Meloni - La Terapia

Il Tempo Necessario (The Time Needed)

Elena Mologni

CATEGORY Living with the illness

This work stems from a personal reflection on the condition of those living with Immune Thrombocytopenic Purpura.

People with this disorder find themselves in an uncommonly fragile condition in which the body requires an especially gentle touch and “sensitive care”. Here we are not only talking about care in the medical sense, but also as regards the human approach to the person, drawing close to them and their world. This is why I wanted to place the body at the centre of the project in dialogue with a red thread (a metaphor for blood, the thread of life), the thread found in legends. The same thread that Ariadne gave to Theseus and that allowed him to enter and exit the Minotaur’s labyrinth. The thread that sometimes traps us, prevents us from moving forward, tightens its grip and gives us “a hard time”, but also emphasises shapes and caresses us. A thread that pulsates, like a living heart.

I also wanted to reflect on the dimension of time. The twelve photographs are arranged in a circle, as if to mark the hours of an imaginary clock, and are also a metaphor for the months of the year. Time, in its infinite facets, is necessary in order to come to terms with oneself, to process one’s condition and to go through the various stages demanded by illness. The central photograph shows the centrality of the person and the possibility of the existence of a “magical time”, a moment of enlightenment through which one can rediscover oneself and one’s value as a living person, despite everything.

Technical data: 1×1 m sheet, photographs 7×10 cm each, diameter circumference 20 cm, length of red thread used in the photos 120 cm. Each number is the result of reflection on the number of people with ITP in Italy.

5000 nodi (5000 knots)

Milda Poderyte Visentin

CATEGORY Moment of diagnosis

I chose the “Moment of diagnosis” category because according to what I learned from the testimonies of people with Immune Thrombocytopenic Purpura, diagnosis is a very important, decisive and often frightening moment. I came up with the idea of using the macramé technique, which is performed using just the hands, without the aid of any tools.

I tied more than 5000 knots with white string on a red string. The white knots represent the white platelets, and the hands that knot the body that produces them. Before diagnosis, it is hard to understand just how important platelets are. Only later, when the disease manifests itself, are they counted and it becomes apparent that the number of platelets decides the quality of people’s lives. What I tried to express, is that before diagnosis, life goes calmly on and even when the first symptoms start to appear they don’t usually seem very serious. And then … the moment the disease is named, it seems like the whole world comes crashing down, because a person who was healthy before discovers that he or she has a chronic autoimmune disease, which is rare, unknown, something they have never heard of before.

Even when treatments subsequently start to work and everything calms down a little, they know that life will never be the same again, because the disease can reappear at any time. I tried to create an effect similar to the surface of the sea moved by the waves, signifying the difficulty of living with the disease, and a long sword of Damocles, representing the ever-present threat.

Because life after diagnosis is like that – sometimes calm, but when symptoms reoccur they mark the beginning of a new storm.

Canvas: 70x50cm, total length: 180cm
Materials: cotton string, cotton canvas, acrylic paints.