Rome, 21 June. (Adnkronos Health) – Hidradenitis suppurativa (Hs) is “an unrecognized pathology that significantly weakens the quality of life of patients. It presents with lesions of various types: nodules and abscesses up to fistulas, with deep fistulous tracts, even confluent, in the more advanced stages”. The disease “deserves attention from the scientific community, and also from the institutions, because, truly, it impacts the socio-relational life of these patients”. This was said by Mario Valenti, dermatologist and researcher at Irccs Istituto Clinico Humanitas Rozzano, on the occasion of an event for discussion between clinicians, patients and companies, organized on the occasion of World Hidradenitis Suppurativa Day, which is celebrated on 6 June. (Video Valenti)
Hs is a chronic recurrent and disabling inflammatory dermatosis of the hair follicle which mainly affects people between 18 and 44 years of age, especially women (3 times more than men). “There are many problems that patients have to face” with this inflammatory skin disease which “manifests itself” with “scarring results, even significant ones, and necrosis of the affected parts: mainly in the armpits, buttocks and groin, but also in the skin scalp, face, neck, back and chest”, explains Giusy Pintori, president of the Patient People Aps association. “Certainly – he continues – there is a strong impact from a physical point of view due to the very intense pain and impairment of movement” in the areas affected by the injuries, “but also from a psychological point of view, with disorders such as anxiety and depression, with all that comes with it.” (Video Pintori)
Hidradenitis suppurativa “in addition to compromising the quality of life of patients, it also has a strong impact on their daily relational and social life. “70% of us – explains Pintori – see our professional career compromised. Even more serious is the fact that children and adolescents with this disease see their ability to attend school or university compromised, in the case of children and young people: the pathology is in fact so painful that it causes problems in remaining seated, but also to stand or, sometimes, lie down. The hours of study in class for the kids are really very demanding and it’s not any better for the workers either.” To respond to the “very numerous healthcare needs – specifies the president of Patient People Aps – structured multidisciplinary centers are needed, with innovative tools from both a diagnostic and therapeutic point of view and organized in a network with clinicians and patients working together. Specifically, the dermatologist, acting as coordinator, should “be supported by other trained specialists: the surgeon, the cardiologist, the immunologist, the psychiatrist, sometimes the andrologist and the gynecologist”. Then there are “institutional paths” to be taken, which are being worked on “to have the condition of disability recognized”.
In terms of care, the president of the Association points out that “the majority of patients go to the private dermatologist also due to the length of the waiting lists. We want faster access – adds Pintori – because the clinical picture changes within six, eight hours: it becomes serious in a very short time”. Furthermore, if “drainage is needed” if this is “done in the emergency room, it can also be performed without anesthesia”. Also for this reason “it is necessary to all team up together: the scientific community, patient associations, institutions, media, each with their own experiences and skills. We – the patient representative points out – are available to bring all our experience, to tell everything. Together we can do it”, because when we are all together for the same goal “people’s lives change and we are here, so that healthcare serves people” especially the most fragile ones, like people with this pathology.
The disease is also affected by a diagnostic delay due to a complex patient journey. “The diagnosis – highlights Valenti – is late. We wait several years”, on average 7.2 before giving a name to the symptoms of hidradenitis suppurativa. It is therefore “fundamental to invest in the training of other specialists and general practitioners to try to work synergistically and thus reduce the time needed to reach a reference center that gives access to adequate therapies”. For people who suffer from this pathology, “fortunately”, today there are “several treatments approved and also under development: monoclonal antibodies, but also small molecules – clarifies the specialist – We are therefore absolutely ready”, thanks “to all the developments in scientific and pharmaceutical research, to give therapeutic responses to the patient by trying to ‘tailorize’ the approach, that is, to identify the most effective treatment, at the most suitable moment, for each individual patient, hoping to ultimately improve its quality of life.”
