Throughout the month of November, the city of Novo Hamburgo, RS, will be the stage for the (In)visível photographic exhibition. The exhibition presents images and stories of 24 people living with Pulmonary Hypertension (PH), a rare and chronic disease. The photographs, captured by Cristina Negreiros, Renato Moura and Marina Carrilho, seek to portray the daily routine of these patients with sensitivity and realism.
The exhibition, which will take place at Feevale Campus 2, is an initiative of the support group of the Brazilian Family Support Association with Pulmonary hypertension and Related Diseases (ABRAF) in Rio Grande do Sul. Entry is free and the images will be on display from November 6th to 30th.
HP is a progressive and incurable disease, and it is estimated that around 100,000 people in Brazil currently live with it. The (In)visible exhibition aims to draw attention to the daily struggle of these patients and caregivers, often invisible to the eyes of society.
Pulmonary Hypertension photographic exhibition – Photo: Disclosure
Pulmonary Hypertension photographic exhibition – Photo: Disclosure
“The exhibition is very important to show the life stories of people who have the disease. During awareness month, in addition to spreading information about the disease, we will give a voice to people living with HP, so that they can show and tell about their fears, challenges and dreams”, highlights Flávia Lima, president of ABRAF.
Volunteering and disease awareness
For the exhibition to be possible, the help of some volunteers is essential. Among these people is professor Gillaine Goulart, resident of Sapucaia do Sul (RS). She discovered PH in 2022, after having worsening and recurring symptoms. “I started with a lot of fatigue, tiredness and no physical stamina to walk, ride a bike or climb stairs. Around September 2021, the symptoms got worse and I couldn’t go to my room, because I had to lie down or I would pass out. At first, I thought it was stress and that it would pass. After changing my psychological medication and it having no effect, on January 5, 2022, I passed out at home and was taken to the hospital. I underwent tests for more than a month, until I underwent a right heart catheterization and was diagnosed with PH,” she says.
After the initial shock, Gillaine was referred to a pulmonologist and, subsequently, to the Santa Casa de Misericórdia of Porto Alegre (RS), a reference center for treating the disease in the SUS. “I arrived there in a wheelchair and unable to speak properly. The doctors invited me to participate in a clinical trial of a medicine, and after sending the documents I started taking medication. When I was diagnosed, the ground opened and depression took over, because we lost resistance and physical strength. We feel worthless, and people think we are faking it. We went back to being children, learning to live again, doing everything differently, including building a new life using HP.” Currently, she treats the disease and works to raise awareness and disseminate information on the topic.
Another HP patient and Abraf volunteer in Porto Alegre is confectioner Taline de Oliveira, who discovered the disease after several tests. “I was in my normal routine, going to work and taking care of the house and children, when I started to notice that, when I went to the bathroom quickly at night, my heart would race. The first test I took was the electrocardiogram, which already showed changes. I was referred to another clinic and underwent several tests, until they informed me that I had a heart murmur and would need surgery. I was hospitalized for two weeks and undergoing other tests. I had the surgery scheduled, but on the morning of the procedure, it was canceled after a conversation between the medical team,” she explains.
From then on, without a conclusive diagnosis and with the surgery cancelled, fear took over Taline. After leaving the hospital, some other illnesses were mentioned by doctors, such as anxiety. Another battery of tests was carried out and she was referred to the Santa Casa pulmonary hypertension outpatient clinic. “I am currently undergoing treatment with the correct medications, which help me a lot, along with pulmonary rehabilitation, which has given me a better quality of life.”
“I have a motto: information saves lives. When I discovered the disease, I was very lost and aimless, no one knew or had a word of encouragement to give, everyone was terrified and I was scared every time, at the appointment, the doctor explained to me what I had. Over time, I began to understand that the more I learn about my illness, the more I can help myself and resort to other factors to give me quality of life”, explains Taline.
Service
(In)visible photographic exhibition
- Data: From 06/11 to 30/11
- Time: From 9am to 8pm
- Local: Feevale Campus 2 – covered area. Rua Arlindo Pasqualini nº 103 – Vila Nova – Novo Hamburgo (RS)
- Prohibited: Free
About ABRAF
The Brazilian Association for Family Support with Pulmonary Hypertension and Related Diseases (ABRAF) is a non-profit organization that seeks to support the community affected by Pulmonary Hypertension and Related Diseases, through awareness, support and promotion of public policies. Founded in 2006, ABRAF strengthens the voice of patients and healthcare professionals to face the challenges of these conditions in a collaborative and effective way. Find out more at
