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As a 31-year-old student of theology, Erika Grace Piva Archanjo stumbled and fell frequently, an accident that she and her family attributed to an orthopedic problem. She has never been to the doctor because of this. He only did it at the age of 25, after feeling weakened in the legs and realized that to get up, after s ". to be lowered, he needed to put his hands on the ground.
The diagnosis was made only a year later, when his first child was one year old. Erika suffered from tropical spastic paraparesis which, over time, paralyzed and disabled people.
This is a little known disease, caused by a little-known virus, the human T-cell lymphotropic virus (HTLV-1), of which Brazil is one of the world's absolute champions of the number of people infected with HIV. at least 800,000 – up to 2.5 million depending on source country.
He is part of the family of retroviruses – he was the first of this group to be discovered in 1980 – the same as his most popular cousin, "He integrates with our DNA and can be transmitted" , says Jorge Cbadeb, physician at the HTLV outpatient clinic and professor at the Institute of Tropical Medicine at the University of São Paulo (USP)
. Symptoms and Consequences
Usually, the virus is embedded in the DNA of its carriers. But in 5 to 10% of those infected, it can cause two diseases: HTLV-1-badociated myelopathy or tropical spastic paraparesis (HAM / TSP), and adult T-cell leukemia / lymphoma (ATLL), a type of very aggressive blood cancer that causes the death of the patient within two years.
"Over time, the patient may (19659002)" Over time, symptoms such as lower back pain, fatigue, urinary and badual dysfunction (such as lower back pain) may occur ", explains Adele Caterino de Araujo, researcher at the Immunology Center of the Adolfo Lutz Institute (inflammation of the eyes), dermatitis and emotional disorders, such as anxiety and depression. "
Erika knows this well what is Adele. speaking.
"I had an indisputable phase and when I did, I took a medication, which helped me, but that made me groggy. "
" Then I started a treatment by pulse therapy [terapia baseada em doses elevadas de corticoides por via endovenosa, durante um curto período de tempo] He did it three times a month, coming back from the hospital.We do not know what is worse if the uncontrollable pain caused by HTLV or the reaction to the remedy. "
But not only that.
"In addition to weakness, urinary incontinence and pain, the emotional side becomes extreme Erika explains:" fragile, very crying, a lot of sadness, a lot of anger, a lot of control, he I had to find a culprit for this evil. I fought with my father because he and his mother used drugs and AIDS (she died 24 years ago). After all, he was co-author of this "crime" because it's of them that I should have taken HTLV-1. In addition, I was afraid of losing my husband, who would have been a crazy wheelchair?
According to Adele, HTLV-1 acts to preferentially infect CD4 + T cells (major cells of the immune system) and can remain inserted into their DNA in the form (latent state of the retrovirus RNA after its incorporation). in DNA of the host cell)
"Cell-to-cell contact is required to spread, so that transmission through blood is virtually non-existent or ineffective. "As the proviral burden of HTLV-1 is low, the proliferation of infected cells promotes the spread of the virus in the body."
Slow symptoms to appear
The estimated time between HTLV-1 infection and the development of the disease is long and is usually around the fourth decade of life.
"It is reported that about 5% of infected people develop diseases, but these data seem to be underestimated, as more than 20% of patients in Brazil develop a condition badociated with them," notes Adele.
Despite these numbers and the problems it poses to people who develop diseases, HTLV-1 receives little attention in Brazil and even in the world. Doctors and researchers who work with him complain about the lack of structure and the lack of specific actions against the virus. There is no national program to try to control or eradicate it.
"There is no treatment for the diseases it causes, but attention has not been paid to these diseases and they are not even among the diseases neglected by the World Health Organization. "The fact that the vast majority of patients are asymptomatic is one of the possible reasons why HTLV-1 does not receive the attention it deserves," Adele said.
evolutionary terms, it is an old virus, it is well adapted and most people do not develop the most serious complications because the patient's immune system controls it.
In most cases, carriers do not even know or do not know are infected.
"They have trouble climbing stairs, a pain, but who will see a doctor for this reason?", asks Cbadeb. "When someone? on the one hand, he does X-rays, CT scans, MRI scans and, in neral, the results are normal. It happens that the person spends seven or even ten years, discovering the cause of these symptoms. "
Unknown also supported
The lack of knowledge of HTLV-1 by professionals of health itself is another problem that contributes to the wide gap that separates the onset of symptoms from the diagnosis.Cbadeb reports, for example, the case of a patient from the interior of São Paulo who consulted 29 doctors until she found one who was living at the HTLV outpatient clinic at Emílio Ribas Hospital and knew the virus well.
"He asked for a serology. [exame de laboratório realizado para comprovar a presença de anticorpos no sangue] that costs about 3 reais and that is positive, "he says." But if you do not think and do not ask for the exam, you can not identify the infection caused by it "
In order to inform and mobilize society and public authorities about the meaning of infection caused by the first described human retrovirus, the International Association of Retrovirology (IRVA) instituted HTLV World Day, November 10.
Also, in May of this year, doctors, researchers and patient representatives from around the world sent an open letter to WHO asking for the creation of strategies for the eradication of the virus, including more tests, more dissemination and badociated diseases, both among health professionals and the general public
impossible or difficult to achieve, forms of transmission of the virus being well known. There are three types: parenteral (by blood transfusion and sharing of contaminated needles and syringes when using licit and illicit injection drugs), badual (during bad without condoms) and vertical (by badfeeding). prolonged, during pregnancy and at the time of delivery)
"At the present time, the first route of diffusion has decreased considerably in Brazil as it became mandatory for HTLV serology in all blood banks of the Country since 1993 "
Importance The city of Nagasaki, Japan, is an example of an effective strategy to combat the transmission of the virus: steps have been taken to test pregnant women and help surrogates HTLV-1 virus to not badfeed their baby. children, or to do it for shorter periods – not more than six months. Thanks to this, it has been possible to reduce the prevalence of the disease from 20.3% to 2.5% in 20 years
According to Marina Lobato Martins, head of the Center for Scientific and Technical Development, Hemodynamics and hemotherapy of Minas Gerais. ), linked to the State Secretariat for Health in Minas Gerais, Brazil must take steps to ensure that the number of carriers of HTLV-1 does not continue to increase
"Any uncontrolled communicable disease may increase over time because infected people will continue to spread the virus to other people. "
According to her, this is especially true for badually transmitted infections. "It is necessary for HTLV to participate in public campaigns for the control of communicable infections in this way, provide diagnostic tests to the population and create reference centers for the evaluation and orientation of the carrier of the virus as well as for the treatment of the sick, "recommends.
Despite the problems he faces, Erika is optimistic. "It's not easy, but we're moving slowly," he says, "
" The information reaches people and even if, by some, we are seen. It was still far from an ideal situation because we are facing a huge public health problem. This disease, for the most part, does not kill quickly, but it ends up making a person languish, swim against the tide of this giant tide remains the best choice. "
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