“When I received the diagnosis” of eosinophilic granulomatosis with polyangiitis (EGPA) “I started writing a blog, to which the person who was then, and still is, our vice-president then registered. Together we decided to create a group on Facebook, looking for other people like us because, being a very rare disease, we had the need, the desire to meet people who were going through the same experience as us. Thus, a small group was born, an initial group of Nel patients 2016 we thought it best to make our experience available, what we had shared and experienced, with other patients. Thus, in 2017, the association was officially born which over the years has set itself the goal of providing training and information. to patients, but above all to doctors, to facilitate the early diagnosis of the disease. The prognosis of EGPA is in fact very linked to the timeliness of the diagnosis”. This was said by Francesca Torracca, president of Apacs (Churg Strauss syndrome or EGPA patients association), on the occasion of the Ecm course dedicated to EGPA, an eosinophilic disease also known as Churg Strauss syndrome, a rare pathology which every year in Italy has between 2 ,5 and 7 new diagnoses per million inhabitants.
The main difficulties encountered as patients have lately been “slightly improving, thanks also to the advent of new drugs” as a result of “investment by companies, doctors, information on the need for early diagnosis of pathology – underlines Torracca – On average, years pass before the person learns that they have this disease. The onset of the disease is asthmatic, nasal polyposis, pneumonia and is therefore often underestimated by doctors in terms of vasculitis, that is, when small blood vessels are involved, affecting the heart or kidneys, the patient ends up in hospital with a serious situation. In this case, returning to a situation of well-being becomes longer and more complicated.”
“If the diagnosis is made at an early stage, at the beginning of the disease – remarks Torracca – the reversibility is almost total and with adequate therapies, with adequate follow-ups, visits, therapies, the patient is able to lead an almost normal life. everything is normal with a chronic disease. It is different if there is cardiac involvement, sometimes, the lesions caused by the disease are irreversible, so the disease does not progress, but the damage remains and must be. managed. One of our founding members, who had cardiac involvement, lost her life at the age of 35. This is why we are fighting so much, so that this doesn't happen again, so that diagnoses are made early.”
One of the main aspects for good treatment of the disease “is the collaboration between doctors and patients – observes the president of Apacs – Our multidisciplinary medical board is made up of specialists from all the disciplines involved in the pathology: immunologists, rheumatologists, pulmonologists, cardiologists. It is in fact essential for the patient to be informed about his condition, about the evolutions he is going through. This is why it is important that doctors talk to each other and talk to patients to create a synergy that helps everyone work and feel better.” .
Furthermore, “we are part of the various study groups on EGPA, such as the European one, in which we bring the voice of patients. We are present in European bodies, in many Italian regions, with our delegates, but also at working tables and we carry out training and information events for both doctors and patients also with social campaigns to raise awareness – he concludes – of both the association and the pathology”.
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