2023-09-21 13:10:38
by Health Editorial Staff
The «Unwearable Collection» by the American artist Bart Hess, presented during the Milan Fashion Week, also inspired a contest for fashion students and is part of the campaign «On My Skin: living with GPP»
Physical pain, skin rashes, sense of isolation and uncertainty, constant threat to one’s life. These are the five aspects that characterize the experience of people living with generalized pustular psoriasis (GPP – Generalized Pustular Psoriasis), a rare skin pathology which represents approximately 1% of all cases of psoriasis and which affects at least 150 people in Italy. people. An experience marked by pain and loneliness, which was represented by the five sculptures of the «Unwearable Collection» created by the American artist Bart Hess: a «collection» that no one would want to wear which will be exhibited in Milan at the Dynamic Art Museum until 23 September.
The project
The exhibition, which toured the world and arrived for the first time in Italy, in Milan, during Milan Fashion Week, also inspired a contest dedicated to the students of the Academy of Luxury and Fashion. The five projects most representative of the experience of patients with GPP will be paraded at the vernissage of the «Unwearable Collection», during which the winning project will be awarded. The initiative is part of the «Sulla Mia Pelle: living with GPP» campaign, a project promoted by Boehringer Ingelheim Italia, ADOI – Association of Italian Hospital Dermatologists-Venereologists and Public Health, SIDeMaST – Italian Society of Dermatology, Venereology and Sexually Illnesses broadcast, APIAFCo – Italian Psoriasis Association Friends of the Corazza Foundation, OMaR – Rare Diseases Observatory which was presented today in Milan at Palazzo Lombardia.
«The Lombardy Region supports these initiatives which aim to shine the spotlight on rare pathologies, sometimes little known but disabling and, in some cases, even fatal – declares the president of the Lombardy Region Attilio Fontana. –
Generalized Pustular Psoriasis, among other things, also causes serious psychological distress in patients. The exhibition also inspired a fashion show within Fashion Week. I think it is a very strong message, because it is not easy to “wear” this pathology. Art is a powerful means of expression capable of conveying important messages, demonstrating that fashion week must and can become a moment of attention and reflection. I also want to thank the doctors in Lombardy who, on a daily basis, support patients in the long therapeutic journeys necessary to live with the disease. In Lombardy there are centers of excellence which, through dedicated clinical paths and great team work, achieve great results. The virtuous collaboration of the pharmaceutical company Boehringer Ingelheim Italia, the scientific societies ADOI and SIDeMaST, the patient associations and the Accademia del Lusso e della Moda demonstrate that great challenges can only be overcome through a great communion of intent”.
The illness
Generalized pustular psoriasis (GPP) is a rare and serious disease: especially the very extensive forms can cause potentially life-threatening complications, which in some cases require admission to the emergency room and hospitalization in an intensive care unit. Mortality data in studies of patients with GPP are limited, but rates between 3% and 7% have been reported. The path to identifying it is not easy: to distinguish it from other similar conditions, laboratory tests, a careful evaluation of skin symptoms and the clinical course and potential triggering factors are necessary. The difficulty in recognizing GPP very often leads to a delay in diagnosis (even years) and in access to therapies, with negative repercussions on the physical and mental and psychological well-being of patients. Patients sometimes find themselves in the situation of having to go to hospital repeatedly precisely because the pathology is not recognised, and this hinders and delays access to available therapies.
Countryside
The entire «Sulla Mia Pelle: living with GPP» campaign leverages the coalition between patient associations, professionals, scientific societies, companies and institutions, with the common objective of bringing to light the unmet needs of people with GPP, to which requires an even more coordinated approach between all the actors involved in the patient’s clinical path. The initiative also aims to shine a spotlight on the impact of GPP on the health and lives of people living with this disease, inviting the public to “put yourself in their shoes”. Morena Sangiovanni, President of Boehringer Ingelheim Italia, declares: «Through the language of art and fashion, the “Unwearable Collection” tells the story of the experiences of people with GPP, forced to carry the signs of a rare, painful and little-known disease. in the clinical setting. With the project we set ourselves the objective of drawing attention to concrete health needs that are not yet fully satisfied, starting with the right to a timely diagnosis, adequate care and a satisfactory quality of life. This is also the commitment of the “GPP Coalition”, which involves us alongside the scientific world, advocacy and institutions to help find answers to patients’ priorities.”
The voice of the campaign’s supporters
Great support for the campaign also from the scientific community: «I believe it is essential to ensure that public opinion, which has no experience of a rare and little-known disease such as generalized pustular psoriasis, because it does not have the medical expertise nor the experience of illness, can be put in a position to be aware of patients’ problems, their needs, the critical issues they face in everyday life – declares Francesco Cusano, President of ADOI (Association of Italian Hospital Dermatologists-Venereologists and Public Health ) -. We therefore welcome the possibility of undertaking alternative “paths of perception”, which follow different expressive tracks, as in the case of the languages of art and fashion used in the campaign “On My Skin: living with GPP”, which allow ordinary people to put themselves in the ‘shoes’ of patients with GPP and understand their condition a little more.”
«Awareness certainly constitutes a key element for the early diagnosis of GPP and must necessarily involve all those clinical colleagues who can have initial contact with patients, even before the dermatologist – says Angelo Marzano, Director of SC Dermatology, Hospital Policlinico of Milan and Director of the School of Specialization in Dermatology of the University of Milan – . The clinical world must make an effort to inform and inform itself, in the interest of patients who too often receive late diagnoses and who, therefore, do not access the treatment process promptly. On the other hand, the patient himself, although well aware of the seriousness of the pathology he experiences on his own skin, could underestimate the value of turning to a specialized center. Turning to the right structures can instead enormously improve the quality of life of those affected by GPP and this is a fact that must absolutely be valorised.”
«It is not the first time that our Association explores contexts other than those usually included in the health sphere to amplify information and raise awareness of skin pathologies: for example, in the past we created a photographic project starring a patient with psoriasis generalized pustular disease, to show everyone what this disease is, what it means to live with it, what it means to have it on your skin – declares Valeria Corazza, APIAFCo, President of the Italian Psoriasis Association Friends of the Corazza Foundation -. The initiative which involves the students of the Academy of Luxury and Fashion and therefore brings awareness about GPP to “encroach” into the world of fashion, but also of art, because the models created within the context of the contest are inspired by sculptures from the Unweareable Collection, does not directly show the disease, but symbolically illustrates its physical and psychological effects: a first step that is certainly useful in bringing public opinion closer to our world and trying to understand it better”.
«Telling the daily life of those who live with a little-known disease is already an added value in itself. But when it is possible, as in the case of this campaign, to involve areas usually far from the world of the ‘medicine bubble’ it is as if a great repeater has been acquired – says Ilaria Ciancaleoni Bartoli, Director of OMaR – Rare Diseases Observatory -. If with those previously available the message could only be transmitted to those who were sensitive to the issues of well-being, research and healthcare, today with this new repeater it will be possible to reach people who live in completely different “bubbles”, and it can only be a good thing since GPP – like many other rare diseases – is transversal, and is not affected by qualifications, occupation or hobbies. We must be able to bring information and awareness everywhere, in order to reach everyone, and this campaign manages to do so in an effective and original way.”
«We are very proud to support such an important cause as that of GPP, declares Laura Gramigna, Director of the Accademia del Lusso Roma. Fashion is not just costume but can be a strong megaphone to draw attention and create buzz on relevant topics such as, for example, health and research. With the students of Accademia del Lusso we wanted to make our contribution by showing, through an explicit and almost brutal visual language, what it means to suffer from this pathology”
September 21, 2023 (modified September 21, 2023 | 1.10 pm)
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