Rare Disease Awareness Day

On February 28, Farol da Barra was the stage for Rare Disease Awareness Day, a movement that seeks to raise society's awareness of a problem so aggravating throughout Brazil, which are rare diseases.

The event was attended by several representatives of associations from other states, such as state deputy and pastor José de Arimatéia, who supports the movement, the president of the Bahia Association of Friends of the MPS (ABAMPS), Márcia de Oliveira and the professor from Escola Bahiana de Medicina e Saúde Pública, Mark Almeida.

Medication
Most patients with pathologies considered rare complain of lack of medication, as is the case of Bruno Dezan, 56, who suffers from acromegaly, a syndrome caused by increased secretion of growth hormone. “I've been unemployed because of the disease and I'm not able to pay for the medication that is lacking at the Diabetes and Endocrinology Center of Bahia (Cedeba), for four months and, therefore, my disease only worsens”, he vents. Damiana Souza de Jesus, mother of Larissa Jesus Souza, eight years old, also gave up work to take care of her daughter who has mucopolysaccharidosis 6 and reports that the disease is very aggressive, requiring special care, in the case of her daughter, who suffers from problems in the heart and joints in the body.

the teacher of Bahiana, Dr. Marcos Almeida, emphasizes that the objective of the walk is to sensitize the government and health managers about the need to provide assistance to patients with rare diseases, as well as inform society about their existence. He highlights the initiative of Escola Bahiana de Medicina e Saúde Pública, who dived into the project, initially disseminating among the students themselves about these rare diseases, little studied by health professionals. “The school is seeking to guide and improve the quality of life in the treatment of these patients”, he reinforces.

According to the president of the Bahia Association of Friends of MPS, Márcia de Oliveira, 2015 will be a year of hard work to help people with these diseases. "We work on guiding patients, informing them where there is treatment, where to get a more accurate diagnosis and, even with many partnerships that we have, as is the case with Bahiana, Hospital Roberto Santos, Hospital das Clínicas, Irmã Dulce, among others, we still have a lot of deficiency in the part of medications, which are expensive and, in many clinics, are lacking”.

According to the Ministry of Health, around the world from six to seven thousand rare diseases are known that affect up to 65 individuals in a group of 100 thousand. This means that, for every two thousand people, 1,3 may have this type of disease, so it is important to have the support of the authorities together with the secretaries of health to give a little more quality of life to these patients, who suffer every day with the lack of qualification of medical care across the country.