Muscular dystrophies under discussion takes place in Bahiana

Last Saturday, July 16, the meeting “Muscular Dystrophies in Discussion” was held in the Pátio do Pavilion II of the Academic Unit Brotas da Escola Bahiana de Medicina e Saúde Pública.

The event was coordinated by the neurologist, Dr. Marcela Machado, and open to the public, bringing together specialists in orthopedics, neurology and nutrition, as well as patients and family members with muscular dystrophy, with the aim of promoting a broad discussion about cases of dystrophy. Throughout the program, information stations for patients and families were presented, covering subjects on respiratory and motor physiotherapy, speech therapy and psychology.

The opening of the event was given by the member of the Alliance Dystrophy Brazil (ADB) Sheila Vasconcelos and, soon after, lectures were given on the themes: Updates on Muscular Dystrophy by the neurologist, Dr. Marcela Machado, Spine Care, by the orthopedist, Dr. Sérgio Murilo dos Santos Andrade and then on Adequate Food for Patients with Muscular Dystrophy, presented by the nutritionist specialized in neuromuscular diseases, Patricia Stanich and ending with a lecture on the Importance of Associations given by the president of the Carioca Association of Dystrophy Patients Muscular (Acadim), Maria Clara Migowisk.

The neurologist, Dr. Marcela Machado, explains that the event came from family members who wanted to mobilize with the aim of forming an association in Bahia to support and provide adequate assistance to patients with these dystrophies.

“Since these are rare diseases, many patients have difficulties in their diagnosis and the idea of ​​the programming is precisely to join forces to spread knowledge to people. Another important factor is that the role of associations around the world has grown a lot, such as the European and American associations that were the most important to stimulate research that today have given many positive results, bringing innovative medications to this group of diseases. We are trying to try this along the same lines, here in Brazil, above all to clarify and pressure the government to improve the quality of health”, he explains.

For the ADB member, Sheila Vasconcelos, the event's objective is to inform the population about muscular dystrophies and, mainly, to promote the meeting of families. "We are setting up the Association Bahiana of Muscular Dystrophy and as an association is only built with the entry of people, we need to find these people. Thanks to the enormous support of Dr. Marcela in bringing these patients together, she, who is the reference in neuromuscular for them and also with the support of the Bahiana, we were able to hold this first official event on muscular dystrophy and, for sure, it will be the first of several”, he reports.

"Since it is an alteration that has a great impact on the lives of not only the patient and the family, being a specific area of ​​expertise, it is important to report on general care, as these are patients who have multidisciplinary needs, both in the part of physiotherapy and in psychology, in addition to monitoring with the neurologist from the beginning, and the earlier the disease is discovered, the better the results obtained”, says orthopedist Dr. Sérgio Murilo.

According to the physiotherapist, Glaucia da Silva, from the respiratory physiotherapy stand, her station can guide patients showing some exercises that are possible to be performed in cases of dystrophy.

“Here at the stand, we will also show some models of devices used by dystrophy patients and we will have a demonstration of Lumiare Saúde, bringing some fans and equipment on the market. We will also clarify doubts in relation to physical therapy exercises, what can and what is contraindicated”, he explains.

“I'm from Irecê and learned about the event through the hospital where I undergo treatment. I have waist dystrophy that was diagnosed some time ago and events like these allow us to seek improvements and information about our case”, concludes trader João Paulo Lopes, 34 years old.

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