2nd Acrovida - Encounter of People with Acromegaly and Gigantism

A Escola Bahiana de Medicina e Saúde Pública, in partnership with the Diabetes and Endocrinology Center of Bahia (Cedeba), a unit of the Health Department of the State of Bahia (Sesab), and the Bahia Association of Friends of Mucopolysaccharidoses and Rare Diseases (ABAMPS) held on May 14 , the 2nd Acrovida – Meeting of People with Acromegaly and Gigantism. At the time, patients with these diseases were able to rely on multidisciplinary care, in the facilities of the Teaching-Assistance Clinic of the BahianaOn Brotas.

The action included physicians from various specialties, psychologists, physiotherapists, dentists, social workers, in addition to undergraduate students from the Bahiana who provided free care throughout the morning.

In addition to providing qualified care to patients, the moment also promoted training and the dissemination of knowledge about pathologies that are often unknown by health professionals. "Patients with rare diseases have multiple needs that are not known by health professionals, even in reference centers they are little known. So here, today, we have two aspects: one is the support network for patients with rare diseases, which they are people who circulate in the health network and do not get treatment either due to lack of knowledge about the disease or lack of technical capacity in care. So, this partnership between the Escola Bahiana de Medicina e Saúde Pública and ABAMPS gives them access to a more qualified way to minimize the suffering and complications in treatment due to lack of care. And the other aspect is that this partnership goes beyond today's service. To carry out this event, three meetings were held to train the professionals, teachers and students involved", reports the social worker from Cedeba, Simone Souza da Rocha Matos.

The apprenticeship was also celebrated by the 4th semester student of Medicine, Alessandra Oliveira Santana. She points out that participating in the 2nd Acrovida was important to learn to deal with differences and to realize that the so-called rare diseases affect a large number of people. "It was a surprise to me, because they are called rare diseases and we see many patients with these diseases. Then you think, 'hey, it's rare, but there are a lot of people with these diseases.' these people. It also caught my attention, because they are physically different from us and we have a certain reality shock. But it is interesting for us to get used to what is different because we will see it in our medical practice. be able to help, in some way, these people who end up having little assistance or do not have the assistance they should have from the public health system. It was good to bring them here and meet the various demands in a single moment, a single visit, listen to a little this patient is already gratifying".

The lack of scientific knowledge on the part of health professionals was what Isadora Zottoli, also a 4th semester medical student, pointed out as a concern after her experience at the event. "I think that, as I'm in the 4th semester, I haven't seen this part of rare diseases yet. But I realize that it's not a very discussed subject in the Medicine course, but we see how important it is to know that. We think there are few people, but they are not. And the scientific community still does not have much knowledge, property in relation to treatment and diagnosis, so much so that people have a very late diagnosis, when the disease has already evolved, which impairs the treatment of the pathology. people have engaged in these matters, the more we expand our views to people who need, just like us, assistance that often doesn't happen. It's been very cool. A great learning experience."

The professor of the Medicine course and coordinator of the Telemedicine and Telehealth Center at Bahiana, Dr. Marta Menezes, points out the importance of events such as the 2nd Acrovida, which propose a broader look at health areas that have little visibility. She also highlights the action as an important training opportunity for professionals and students. "Although they are considered rare diseases, we will never identify if we are not prepared for it. And if we do not prepare the student for it, we will not have the professional with this perspective, because they are people who can have a great benefit when diagnosed early . Hence the importance of this subject being included in the list of competences that these students need to develop. We understand that this, in some way, should be in the curriculum, but, in particular, these activities, in which you put the student into practice to perform the service. This has a very large mobilizing power, as the extension is something that trains, that is, with extension it is possible to reach the community and, at the same time, you are having a field of practice, training and capacity building for these future doctors. And as it is an interdisciplinary action, we have the chance to act collectively."