by “The disease gave me a dance, but I learned to dance according to the music. I take it at my pace, without losing my flexibility.” This is how Maria do Socorro Moraes, 60 years old, summarizes what it’s like to live with lupus, a disease she has been living with for two decades.
The pensioner is one of the patients featured in the documentary miniseries Sentindo na pele, produced by AstraZeneca Brasil in partnership with the Centro Universitário Belas Artes de São Paulo, which aims to tell the trajectory and challenges of four women with systemic lupus erythematosus (SLE). Chico Cardoso and Marcos Souza are responsible for directing the work.
The project debut took place in early March, at Shopping JK Iguatemi, in São Paulo, at an event organized by the biopharmaceutical company, and also featured the official launch of the Lupus: A Marca da Coragem campaign, which aims to inform and raise awareness about the autoimmune disease.
On the occasion, the Impact of Lupus in Brazil panel was shown, in a talk show format, composed by Nafice Costa Araújo, president of the Sociedade Paulista de Reumatologia; by Edgard Reis, coordinator of the SLE Commission of the Brazilian Society of Rheumatology; AstraZeneca and patient association representatives; as well as the protagonists of Sentindo na pele.
WITHOUT STIGMAS The event was mediated by actress and journalist Juliana Franceschi, who also lives with lupus. The spectators, on the other hand, participated by sending questions about the topic to the specialists. The quest for quality of life, the importance of emotional support and breaking stigmas were some of the topics discussed.
Evidently, the focus of the project and the ceremony was concentrated on women and their stories of overcoming difficulties — they are also the majority in statistics referring to the disease. However, with regard to prejudice, it was the declarations of Carlos Eduardo Tenório, general coordinator of the Brazilian Association Overcoming Lupus, that drew attention.
Retired due to disability, due to a physical disability resulting from the disease — Carlos has numerous bone infarctions, characterized by the destruction of part of the bone —, he recalls that the stigma is much greater among men, who recurrently suffer in silence because they feel ashamed to share the physical pain and emotional disorders that make them sick.
Daily journey of struggle Recognition. This is the feeling conveyed by the stories told in Sentindo na pele. Also during the talk show, the protagonists Ana Georgia Simão, Camila Maia, Luciane Peixoto and Maria do Socorro Moraes embraced with emotional looks of those who know that living with lupus is not easy, but possible.
The issue of self-esteem, for example, permeates the journey of all of them, who at some point in the treatment lost their hair, and some, due to the corticoids, suffered from considerable swelling. The question “Am I going to stay like this for the rest of my life?” it was done frequently, as Camila recalled. Actress Juliana Franceschi highlighted that it is common for people to confuse fatigue with laziness, something that can give rise to uncomfortable comments.
In the documentary miniseries, the direction chose to show, in a sensitive way, the trajectory of the characters, their daily lives and, mainly, their support networks. Therefore, it relied on reports from family, friends and professional colleagues. Some photos from the past, as well as more recent data and information about the disease, are shown. Topics related to spirituality and financial difficulties arising from the treatment complement the project.
For Aninha, as Ana Georgia is called, writing poetry about her feelings during the treatment of the disease was like a refuge. She created an Instagram profile and, there, met other women who went through challenges similar to hers. Today, in remission, she remembers that, shortly after her diagnosis, one of the goals of her writing was to show that the battle against lupus is a daily one. “Because it is a chronic disease, the people around us normalize it. However, we do not stop suffering and demanding support”, she says.
In Camila’s account, what most called attention was the change of plans that occurred with the discovery of the disease: first, the change of profession; then the unexpected pregnancy. Married to her first boyfriend, who has been with her since the first symptoms of SLE, the baker saw motherhood as a distant possibility and desire. When she least expected it, confirmation came: she was pregnant. Despite the fear, both the pregnancy and the delivery were successful. From now on, however, no children. “My girl gives work for several children”, she confesses, laughing.
FEAR In the third episode of the documentary, Luciane’s mother’s speech was enough for her to burst into tears. On screen, Dona Sônia revealed the fear she felt of losing her daughter to the disease, especially when her granddaughter, Isadora, approached her. The support of parents, sister and husband was essential to overcome the most difficult moments of the disease. Director of a school, Luciane acknowledges having a tough routine and points out that, in her case, the worst crises originate from emotional problems. Therefore, the importance of maintaining a multidisciplinary follow-up, including with psychologists.
As for Maria do Socorro, who was diagnosed with lupus at the age of 40, the biggest challenge is still undergoing hemodialysis, given that her kidneys were affected by the disease. Before, she had sessions four times a week; today, she only does it once. Persistent, even with the discomforts of the treatment, she decided to finish high school with an old colleague. At the end of the course, she was the only one to graduate. Her family, who try to take everyday life in the lightest and most relaxed way possible, is her greatest affection.
* Trainee under supervision of
Sibele Negromonte
