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Maya Viecili almost died of AIDS, but is now living a good and normal life

When Maya Viecili was diagnosed with HIV in 2020, it came as a complete surprise to her. Maya had in and out of the doctor’s office for a year, but no cause had been found for her many symptoms. Having AIDS was a shock but, with the help of medication, Maya ultimately fought her way back to a normal life. Now her mission in life is to help others who are infected and to spread the word about HIV.

Maya Viecili

When a smiling Maya Viecili comes to hug me in the lobby of the National Library in Helsinki, it's hard to imagine that just a few years ago she was dying.

Maya was unexpectedly diagnosed with AIDS in February 2020. She had been ill for a long time and, over the course of a year, had made more than a dozen visits to the doctor. She had rashes, fever, weight loss, stomach problems and depression Her thick hair was falling like autumn leaves. Due to coughing and breathing difficulties, when talking she had to take a breath in mid-sentence, and she could not climb the stairs.

Eventually, it got so bad that Maya fainted because she couldn't get enough oxygen. Her husband rushed her to the emergency department and insisted that she should not be released until they knew what was wrong with her.

As a final test, Maya was tested for HIV in the emergency department. The result was positive.

She couldn’t believe her ears when the doctor gave her the diagnosis. In fact the disease had already progressed to an advanced stage of AIDS.

"My body was crashing, and I had severe pneumonia. I tried to tell the doctor that I had to go home and tell the children about my situation. The doctor said I couldn't leave because I might not make it until the next day."

Maya remained in the hospital and she was started on antiviral medication.

"The doctor said frankly that we just don't know what will happen but we’ll hope for the best."

The doctor made it clear to her that the disease had progressed so far that there was no guarantee of how her body would react to the medicine.

"The doctor said frankly that we just don't know what will happen but we’ll hope for the best. They told me to prepare to say goodbyes and to contact my family in Brazil. So they were preparing me for death."

Maya Viecili

A tough journey back to life

The worst, however, did not come to pass. On the contrary, the effectiveness of the medication was amazing.

"When I arrived at the hospital, I was practically a walking HI virus but, already after the first measurements, the number of viruses in my body had dropped radically.”

Recovery, however, was tough. Eating was difficult, but the doctor said it was absolutely essential because Maya was in such poor health. Her tactics were to take food and water alternately into her mouth, chew it into mush then swallow it bit by bit.

"I decided that I would eat whatever was given to me if that's what my recovery depended on. Some days that's all I did. Breakfast would take two hours, lunch three," she recalls.

During the night, Maya would sweat so much that she would have to change her nightgown several times. When she tried to cook, her fever immediately rose so high that she feared she would have to go back to hospital. Although Maya was at home, she saw doctors weekly and tests were even taken daily in the beginning.

Currently, she has blood tests twice a year and sees a doctor once a year. The infection can increase the risk of some other diseases, so Maya is keeping a close eye on her condition, as she also has a family history of cancer.

"On the other hand, my regular blood tests will probably allow any changes to be detected quickly. I'm not afraid, but I do pay attention to my body and any changes to it."

Maya Viecili

In sickness and in health

One of the characteristics of HIV infection is that the disease can be asymptomatic for years. If not detected and treated in time, the infection will progress stealthily to the AIDS stage, where the infected person will also contract other related infections. The body of a healthy person is usually able to fight off these types of diseases. 

Maya moved from Brazil to Finland with her daughter and Finnish husband in 2018. Her health problems started the following year.

When she was diagnosed, in addition to the pneumonia, she had various fungal infections and viruses in her system, which threatened to cause loss of sight, among other things.

With the right medication, a person with HIV can live a completely normal life and the infection will not, in principle, shorten life expectancy or progress to the AIDS stage. The medication also prevents infecting other people.

"We’d promised each other that we would stay together in sickness and in health."

Once the worst was over, Maya was naturally worried about her husband whom she could have unwittingly infected with the disease. It was a great relief when it turned out that the virus had not been transmitted to him.

At first, Maya was also afraid of his reaction to the unexpected news about her illness. She ended up spending 28 days in hospital. Her husband came to see her every day. But in hospital, the right moment for talking about the future did not come up.

The illness was a shock to both of them, so Maya told her husband she would understand if he didn't want to continue their relationship.

“But he replied that we’d promised each other that we would stay together in sickness and in health. It was a great relief because I have no other close relatives in Finland other than my family – my daughter, my husband and his children.”


Maya Viecili

Talking helps, even if it's not easy

Maya is still not entirely sure how she got infected. She has thought about the people and the situations where infection could have been possible.

She has a strong suspicion of the source but none of her former partners, for example, have admitted to being HIV-positive.

"Ironically, my father is a doctor of infectious diseases in Brazil who is well versed in HIV and has worked extensively with the disease. Since I was a little girl, I've been educating my friends, handing out condoms and reminding them of the importance of testing. But I still got infected."

A year after starting treatment, Maya was finally free of the infections caused by AIDS. It was, however, another year before she was ready to talk more about her illness.

The years involved a lot of therapy, a lot of discussion with her spouse and family and a lot of introspection.

"In the end, I decided it was better to open my mouth. I've always been an open and talkative person. Talking has also helped in this regard."

Spreading HIV awareness her mission in life

Over the years, advocacy and peer-to-peer work have become Maya's mission in life. She is active on social media and wants to spread the word about the importance of testing and the possibilities of medication.

Although the worst stigma around HIV has been dispelled, many people are still ashamed of their disease. Few people want to talk about it in public either.

"It's invaluable to be able to support desperate people in their first steps to reduce their feeling of self-blame and help others feel better. "

Once Maya’s illness had become public, she started to receive messages from all over the world. Almost every day, she hears from the parents, spouses and children of those suffering from HIV.

“In many countries, the stigma of the disease remains strong. It's invaluable to be able to support desperate people in their first steps to reduce their feeling of self-blame and help others feel better. It’s the most important thing I’m doing in my life at the moment."

Maya Viecili

HIV means taking medicines for the rest of one’s life, but does not, for example, prevent having children

Well-treated HIV has almost no symptoms or effect on a patient's life. The most important thing is to start treatment as soon as possible after contracting the illness. An HIV test is the only way to determine whether a person has been infected. Testing is available at any health center. It is also possible to obtain a home test kit from a pharmacy or through Hivpoint.

As HIV cannot be fully cured, treatment involves patients taking medication for the rest of their lives. Effective pharmacotherapy will allow infected patients to remain in good health and avoid spreading HIV to others. The usual treatment for HIV is 1-2 tablets once per day. The first injectable treatments have also become available, and they are administered at an appointment every two months. For some patients with hectic lives or those who travel a lot, injections can be a more feasible treatment than taking tablets regularly. If the patient has a substance abuse problem, medication can be given by administering the HIV medications together with possible opioid replacement therapy.

HIV destroys CD4 cells, which are crucial for a patient’s immune system. The amount of HIV in the patient's blood indicates whether or not the treatment is effective. During an effective course of treatment, HIV will not be spread to others even through unprotected sex. Once a good response to treatment has been reached and the patient is able to tolerate the medicines, monitoring through blood tests and appointments twice per year is enough. Approximately 1,900 HIV patients are treated at HUS.

Emotional support plays a major role in treating the disease. Our doctors and nurses discuss with the patient the ways in which HIV will affect different areas of the patient’s life. We support patients by offering psychiatric consultation, and a sexual counsellor is also available to discuss matters related to sexuality. We also encourage patients to participate in peer support. 

The illness does not prevent a patient from starting a family or shorten their life, as long as it is diagnosed early and the patient is able to adhere to the medication regimen. If a patient with HIV becomes pregnant and HIV is diagnosed early enough, the baby’s risk of becoming infected is minimal.

Untreated HIV is still a life-threatening disease if it advances too far and progresses to AIDS. However, 90 per cent of AIDS patients can also be saved through medication.

Specialist: infectious disease and HIV specialist Jussi Sutinen from the HUS Inflammation Center.

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