Bahiana celebrates MPS International Awareness Day

Last Saturday, May 16th, the Escola Bahiana de Medicina e Saúde Pública promoted the MPS International Awareness Day, an international movement that encompasses all countries to raise awareness of mucopolysaccharidosis, a disease of genetic origin that affects a number of organs and systems of the body.

The Association's social worker Bahiana de Amigos do MPS (ABAMPS), Simone Souza, emphasizes that the aim of the movement is to publicize the disease, as, in many cases, the population is unaware of the causes and symptoms of MPS. “With this dissemination work, the diagnosis can be made faster, thus avoiding the suffering of patients. Today, here at the event, we have a new child from the interior of Bahia who will start the treatment, as we cover the entire interior and our goal is to also integrate the students from Bahiana with the participation of the leagues and we have a differential in the programming that is the presence of a cardiologist, who will carry out cardiac evaluations in all patients”, he concludes.

Heart disease is one of the MPS dysfunctions and cardiologist Daniel Garcia Moreno and student of the Master's in Health Technologies, from Bahiana, attended the event to provide free assistance to MPS holders. "We will do an assessment of the boys' hearts, initially we will perform an echo cardiogram that gives an anatomical notion, as congenital heart defects are very common in mucopolysaccharidosis and, therefore, we will observe in the samples, the incidences and which are the most prevalent defects ”, concludes the doctor.

In addition to awakening society by warning about the disease, the movement also aims to reach government authorities for assistance to the MPS. the teacher of Bahiana, Dr. Marcos Almeida, emphasizes the importance of publicizing the disease and emphasizes the difficulty of patients in accessing medications and specific treatments from the MPS. “It is an international event that has the specific objective of awakening the entire society and the government to the importance of people with rare diseases, in this event, specifically, mucopolysaccharidosis. These patients face difficulties both in accessing the health system and in medication, and they even find it difficult to find health services that provide assistance for the disease. Most of these patients remain undiagnosed and untreated, and this difficulty occurs for several reasons, mainly due to the lack of knowledge of the disease on the part of managers and health professionals”, explains the professor.

The president of ABAMPS, Márcia Oliveira, hopes that the movement will have repercussions even among the authorities, providing improvements in the treatment of MPS. “We hope with every move we make that the government pay attention to people with rare diseases, including ordinance 199, which is not yet in place. We need defined locations for care and that medications are available to meet the needs of patients. The state still has a lack of medication to treat the pathologies, so we need movements like this to publicize and raise awareness of the MPS”, he emphasizes.

Ana Lúcia Neves, mother of Nicole Neves, 7 years old, with mucopolysaccharidosis type 4, explains that the movement is very interesting, as it improves the lives of patients with rare diseases. “We discovered the disease through a blood test and my daughter is no longer able to walk and has changes in her rib cage and, with the help of ABAMPS, she can have access to medication and treatments”, he concludes.

Disclosure is important and, therefore, everyone must mobilize for the clarification and awareness of such a serious disease that encompasses a large portion of society in general.

Check out the photos.