Walk marks Rare Disease Awareness Day at Farol da Barra

Last Saturday 27, Farol da Barra received representatives of associations and non-governmental organizations, as well as patients, patients with rare diseases and family members who participated in a walk marking Rare Disease Awareness Day, an action promoted by the Bahia Association of Friends MPS (ABAMPS) at the local level. The event was supported by Bahiana, the Association of Families, Friends and People with Serious Illnesses, Brasville and the Zás print shop.

Representatives of associations from other states, health professionals from the Bahiana and members of the Academic League of Neonatology and Pediatrics (LANEP).

According to the president of ABAMPS, Márcia de Oliveira, the fight in favor of people with rare diseases is continuous and the health area has achieved some significant achievements, such as ordinance 199 that institutes the National Policy for Comprehensive Care and approves the guidelines for comprehensive care for people with rare diseases in the scope of the Unified Health System (SUS), instituting financial costing incentives. In Bahia, the Hospital das Clínicas (UFBA) is already accredited and the Hospital Roberto Santos is in the process of being accredited to care for patients with these pathologies.

“I'm very happy because this year's journey exceeded expectations compared to last year and, thank God, other representatives of different syndromes are supporting me, such as Duschenne and Lupus Syndrome. With this we see the result of all the work that has been done”, emphasizes Márcia de Oliveira.

the teacher of Bahiana, Dr. Marcos Almeida, emphasizes that the walk is intended to alert authorities of the need for specific and coordinated care for patients with rare diseases who need qualified assistance.

“Our fight is for these people to be assisted in the best possible way and for these patients to be able to find assistance not in multiple centers, but in a few centers with comprehensive care. Therefore, it is always necessary for society to be warned every year so that this fight does not stop”, he explains.

According to data from the Ministry of Health, about 13 million Brazilians are affected by some rare disease and eight thousand pathologies are now internationally characterized as rare. In view of these rates, Governor Ruy Costa sanctioned Law 13.539/16, authored by State Deputy Fabiola Mansur, which establishes the last day of February as State Rare Disease Awareness Day.

“We work at ADAB with neuromuscular diseases and also with neurogenetics, but the main care is with patients with neotrophic lateral sclerosis. The good thing about the clinic is that we managed to condense medical, physiotherapy, speech therapist and psychological care on the same day. This journey is important to publicize this service”, reports Adriele Ribeiro, neurologist at ADAB.

Tereza Melo, businesswoman, mother of Caio Moreno, 21 years old, with Van Der Knaap Syndrome, a very rare pathology that causes possible neurological deterioration followed by convulsive crises among other symptoms, explains that in Brazil there are few cases of the disease and reaffirms its importance to give visibility to patients with rare diseases, as many of them go unnoticed even for lack of knowledge about the disease.

“It's been 21 years of love and my son is my life. It surpassed all medical expectations, but it is surrounded by a whole structure. Unfortunately, for people who depend on the Unified Health System (SUS), public policies still leave a lot to be desired and we are here today in this fight to obtain achievements for all who depend and need help, both in terms of medications and consultations. . It is necessary to have a life and not an underlife”, he comments.

For Jose Costa, 56 years old, rural worker, father of José Vagner, 12 years old, with MPS type 6, the complaint is the lack of medication and the neglect of the health system towards patients with rare diseases.

“This day is important for us and for society as a whole because we have the opportunity to publicize our difficulties both in relation to medications and medical care. We have been without medication available for months and this is very harmful in the course of the treatment”, he explains.

Islane Vasconcelos, student of the Physiotherapy course at Bahiana, 9th semester and member of the marketing and communication board of LANEP, emphasizes the importance of alerting the population about these pathologies. "We have a society that is still lagging behind in relation to this type of information, so it is important to know these pathologies and allow these patients, even with limitations, to be part of activities both in schools and in everyday life."

“I have Duchenne Syndrome and the union is extremely important for us to strive for a better quality of life. What we are actually doing is trying to get people to know about these diseases and exchange this information in favor of a better quality of life”, concludes Vanusa Junqueira, 43, retired and member of the Duchenne Syndrome, disease group degenerative, hereditary, X-linked and related to the absence of essential protein for muscles.

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