“I made HIV a way of helping other people and a life struggle,” says Monica dos Santos Moura, 55, a resident of Santos, on the coast of São Paulo. It wasn’t always like that. She says she got a scare when she read the term reagent on the HIV test she took when she was pregnant in 1991.
“It was overwhelming. While I was experiencing the most emotional moment of my life, which was being a mother, I discovered that I had a disease that was fatal. I was not prepared and, right away, it didn’t sink in. Only later did I understand what was happening. I decided not to hide anything from anyone. I called my family and was clear with everyone, I couldn’t go through this alone.”
At the time of the diagnosis, at just 24 years old, Monica feared that her son would be born with the disease, which did not happen thanks to the treatment that began immediately after the positive test.
The husband, who until then did not know he had the virus, died shortly afterwards. “He died sad, guilty. I never blamed him. We were young, there was no information that exists today. I remarried and spent 17 years with a wonderful man, who also passed away. After that, I preferred to go on with my life alone.”
Comes back after the first hospitalization
With the weapons he had at the time — drugs such as AZT, DDI and DDC —, he continued in the battle against HIV, until, in 1996, he fell ill as a result of opportunistic diseases. “I spent three months in the hospital. I had toxoplasmosis, I couldn’t walk, I couldn’t see. But I really wanted to fight and I didn’t conform. Even the doctors doubted that I would make it out alive. I didn’t even know how strong I was.”
What could have shaken Monica’s confidence turned into a willingness to help others. “I’ve always looked at the HIV face-to-face and I went from being just a patient to becoming an activist. I sought training, information and became a volunteer at the place where I was assisted. There were a lot of people in need of help and I was willing to fight.”
prevention agent, Monica dreams of ending stigmas, prejudices and to this day fights for the collective. “I slapped my face, appeared on television and that was important to me and my family. Continuous transmitting my message and my objective is to help, to give strength. A lot of people told my mother how strong I was to be there fighting for other people.”
Empowerment helps to reduce prejudices
Infectologist Fabrício Silva Pessoa, from the University Hospital of UFMA (Federal University of Maranhão), recalls that this empowerment is essential for people living with HIV (PLHIV) in this age group. “These are patients who have gone through different situations in these 40 years. They understand the importance of resorting to medication and adherence to treatment. They are multipliers of this information correctly, including for other patients.”
In Brazil, according to the HIV/Aids Epidemiological Bulletin 2021, people between 55 and 59 years old correspond to 20.1% of men and 10.2% of women with HIV.
The infectologist recognizes that, unfortunately, prejudice still surrounds the lives of these individuals. Therefore, it reinforces the need to strengthen this patient to deal in the best possible way with hostile situations. “In addition to medical follow-up, individualized work is needed to verify whether the patient is prone to triggering depression or another disorder.”
Important advances for patients
Pessoa points out, however, that there are many reasons to celebrate and that, since the first diagnosis of the disease in Brazil, in the 1980s, there have been many advances, both in terms of medicines and the increase in life expectancy.
“In the past, the cocktail regimen had several drugs and caused many side effects. Today, we have been able to simplify treatment with a smaller number of medications, with two-in-one, three-in-one regimens. The drugs are well tolerated, in addition to having a low effect collateral. The result is patients living with a chronic pathology that requires care.”
Pessoa comments that, with aging, it is normal for patients to develop health problems common to age, such as high blood pressure, diabetes, dyslipidemia (high cholesterol). “Prevention measures, with healthy eating and physical exercise, are essential for anyone. And for people living with HIV it is no different. Treatment ends up being done together, without major impacts precisely because of advances in antiretroviral therapy. “
One day at a time
Monica, who in 31 years of diagnosis has gone through ups and downs, always thinks about the future and does not forget everything she has achieved fighting for her and for the other patients. Even so, she looks ahead.
“Sometimes, I feel discouraged. Even today I see people looking at me crookedly, making comments and this makes me a little upset. Our psychological is constantly confronted, but I have a support network and I’m trying to get back on my feet again, because I still want achieve a lot. I have two grandchildren and my fight is for them, for my family and for my dog, Zyon.”
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