'Aids took my vision in my right eye and limited my movements', says young man who encourages early diagnosis

‘Aids took my vision in my right eye and limited my movements’, says young man who encourages early diagnosis

In 2015, Vitor Ramos, at the time an administration student, began to experience flu-like symptoms. “It was just a sore throat and mild discomfort. Who would be able to associate that with HIV?”, asks him, who only received the diagnosis three years later.

Vitor says that the hypothesis took a long time to cross his mind. “I thought I had never had sex with someone who had the virus, because in my mind that person would be bedridden and very weak,” he says.

Two years after the more general signs appeared, in 2017, Vitor had intense diarrhea that made him lose about 20 kilos and go through eight hospitals in search of a diagnosis in the city of Araçariguama, where he lived in the interior of São Paulo, and in nearby municipalities.

“The gastroenterologist ordered a colonoscopy which came back inconclusive for Crohn’s disease [uma doença inflamatória do trato gastrointestinal], the doctor’s main suspicion. Even so, he decided to treat me as if I had the frame,” he recalls.

“At the time, my mother even asked: ‘Doctor, can’t it be HIV?’, and he replied that it was not ‘common in men’. I understood that as a mistaken assumption that I would be a straight man, since HIV is still very much associated with homosexuals.”

Infection with the virus, in fact, can happen to anyone, regardless of their sexual orientation. HIV is present in secretions (fluids) such as blood, semen, vaginal secretions and breast milk. That is why it is always recommended to use condoms during sex, and that HIV-positive mothers feed their babies with infant formula.

In addition to the incorrect diagnosis, the doctor who attended Vitor prescribed an immunosuppressive drug, effective for the treatment of Crohn’s disease, but extremely harmful for those living with HIV.

“Immunosuppressive drugs can act by weakening different parts of the immune system depending on which drug is prescribed. Considering a patient who already had low cellular immunity, if he uses medication that worsens immunity, there is a risk of leaving him very susceptible to opportunistic infections, which sometimes HIV alone would not be enough to cause”, points out infectious disease specialist from Acre Dyemison Pinheiro, who did not follow Vitor’s case.

“From the day I started taking the medication, the worsening was very fast. I say that I went downhill, and a very steep slope. I started to walk slowly, the diarrhea did not stop, I just stayed at home because I might need the bathroom at any time. I had to leave college”, recalls Vitor.

With the condition increasingly serious, his family insisted that he look for an emergency room. “I tried to hide it by saying that I was fine. But one day, my sister arrived determined to take me. I walked to the car, and when we got to the hospital, I couldn’t feel my legs anymore. I had to be taken out by a security guard and I stayed in the chair. on wheels. There, I felt that something was very wrong.”

It was on this day, April 8, 2018, that Vitor was diagnosed with HIV.

Vitor with the nurses at the hospital, where he spent four months in hospital – Photo: Personal archive/via BBC

The CD4 immune cell count in her body was extremely low. For comparison, the index in a healthy person should be above 500. When it is below 350, it indicates that the person has AIDS. Vitor’s CD4 count at the time of diagnosis was 2.

“With treatment, it is possible to improve the number, but the index does not take into account the immune recovery. Some people have important qualitative flaws in the defense cells, and therefore, there are researchers who advocate that, once the number was below 350, the person will always have AIDS”, explains Pinheiro.

In the first week of hospitalization, Vitor only remembers flashes. Something that marked him was a conversation he heard from the doctors, who said that they would not treat HIV at first, as there were other opportunistic diseases leaving his body weak.

In addition to the AIDS virus, tests found neurotoxoplasmosis (infection in the central nervous system), Kaposi’s sarcoma (cancer that affects the innermost layers of blood vessels) and the sexually transmitted infections syphilis and HPV.

Vitor with his mother, dog, and health professionals who followed his case – Photo: Personal archive/via BBC

“Although HIV is dangerous, it may not be the main condition responsible for death. Due to the excess of medications, in a case with different opportunistic infections, it is preferable to focus on what offers more risk”, points out Pinheiro.

In all, Vitor spent four months in hospital, including two periods in the intensive care unit (ICU).

“I lost the movement of my legs and arms and I was dependent on others for everything. My body hurt a lot, and on one of the nights I started to see everything red. That was when they took me to the ICU for the second time. There, I had no visitors, looking at the ceiling and not moving. I just heard noises of people dying or appliances beeping. These were extremely difficult days”, he recalls.

The first discharge took place after about three months, but after a week at home taking medicine for supposed conjunctivitis, Vitor lost sight in one eye.

Back at the hospital, an ophthalmologist specializing in AIDS diagnosed the presence of ocular cytomegalovirus (an infection caused by a virus in the herpes family) and recommended urgent hospitalization.

“I didn’t want to go back at all, I cried a lot, but I was hospitalized. I also continued doing physiotherapy, and, to help me recover my movements, my mother put a towel under the plate of food and asked me to try to make the meal alone . I looked like a child dirtying everything, but little by little, I managed to do it”, he says.

Vitor next to his mother (on the left) and next to his sisters. According to him, family support was essential in the treatment — Photo: Personal archive/via BBC

“In the months I spent in the hospital, I lost autonomy, freedom and privacy. My father asked me: ‘What is the first thing you want to do when you leave here? Travel, go to the mall…’ And I replied that I wanted to take a shower. standing alone. He was surprised.”

Vitor says that his whole family was very affectionate and essential during the treatment period. “If I talk openly about living with HIV on social media today and encourage other people to get tested, it’s only because I had a very strong support network.”

Physical therapy sessions to regain movement were painful. “When the nurses came in, I pretended to be asleep so I wouldn’t have to go through the exercises, which I didn’t think helped at all. It wasn’t until I got emotional seeing my toe move subtly that I got more motivated.”

From a wheelchair, Vitor started using a walker, then a pair of crutches and, finally, he walked with the help of a cane – an evolution that took a year.

Vitor on the day of his hospital discharge and in a recent photo — Photo: Personal archive/via BBC

When he was discharged, Vitor’s CD4 count was 40, a number that is still considered quite low. Therefore, the condition for returning home was that he returned to the hospital every day to receive medication in his vein.

“They said I wouldn’t make it past 200, that my case was very serious. Those were very difficult days. The drugs took away my strength.” In the last two tests, his CD4 was over 470.

Although the rate does not represent that he is cured, it shows a good response to the treatment, which Vitor says he follows to the letter until today, with medicines he obtains from the SUS.

In addition, shortly after starting treatment, Vitor reached the stage of undetectable HIV, that is, he does not transmit the virus sexually (even without protection).

According to infectious disease specialist Dyemison Pinheiro, it is entirely possible that, even in severe conditions such as Vitor’s, in which people have their immunity partially irreversibly compromised, the level of undetectable HIV can still be reached as treatment progresses – a factor is not linked to the other.

He works out regularly, at the gym or playing volleyball with his family, finished college and recently got a job.

“Because of the late diagnosis, which took almost three years, AIDS made me lose the vision in my right eye, part of my hearing, and caused me to have sequelae from a certain movement delay in my left leg. But I feel great, I consider that my recovery was very good, and today I live well.”

On social media, Vitor encourages other men and women to seek a test before the virus advances in the body. “If I could go back in time, this would be the advice I would give myself. I would also speak to research the virus and not be influenced by what anyone says. There is life after the diagnosis”, he says.

Vitor currently, alongside his friends Sammia and Kaique — Photo: Personal archive/via BBC

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